Livng Well With Copd a Learning Tool for Patients and Their Families

PLoS I. 2018; thirteen(ix): e0203326.

Development of a complex intervention for early on integration of palliative home care into standard care for stop-stage COPD patients: A Phase 0–I report

Charlotte Scheerens, Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Software, Visualization, Writing – original draft,^{1, ii, *} Kenneth Chambaere, Conceptualization, Project administration, Resource, Supervision, Writing – review & editing,^{1, two} Koen Pardon, Writing – review & editing,^ane Eric Derom, Writing – review & editing,^{2, 3} Simon Van Belle, Conceptualization, Writing – review & editing,^{one, 4} Guy Joos, Conceptualization, Writing – review & editing,^{2, iii} Peter Pype, Conceptualization, Writing – review & editing,^{1, five, ‡} and Luc Deliens, Conceptualization, Supervision, Writing – review & editing ^{1, two, ‡}

Charlotte Scheerens

^one End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium

² Department of Internal Medicine, Ghent University, Ghent, Kingdom of belgium

Kenneth Chambaere

¹ End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Belgium

ⁱⁱ Department of Internal Medicine, Ghent University, Ghent, Belgium

Koen Pardon

¹ Finish-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel (VUB), Ghent, Kingdom of belgium

Eric Derom

² Section of Internal Medicine, Ghent Academy, Ghent, Kingdom of belgium

³ Department of Respiratory Medicine, Ghent University Hospital, Ghent, Belgium

Simon Van Belle

ⁱ End-of-Life Care Research Group, Ghent Academy & Vrije Universiteit Brussel (VUB), Ghent, Belgium

^four Department of Medical Oncology, Ghent University Infirmary, Ghent, Kingdom of belgium

Guy Joos

^two Department of Internal Medicine, Ghent University, Ghent, Kingdom of belgium

ⁱⁱⁱ Department of Respiratory Medicine, Ghent Academy Infirmary, Ghent, Kingdom of belgium

Peter Pype

¹ End-of-Life Intendance Enquiry Group, Ghent Academy & Vrije Universiteit Brussel (VUB), Ghent, Kingdom of belgium

⁵ Department of Family unit Medicine and Master Health Intendance, Ghent Academy, Ghent, Belgium

Luc Deliens

¹ End-of-Life Care Inquiry Group, Ghent Academy & Vrije Universiteit Brussel (VUB), Ghent, Belgium

^two Section of Internal Medicine, Ghent University, Ghent, Belgium

Mojtaba Vaismoradi, Editor

Received 2018 Apr ten; Accepted 2018 Aug 17.

Supplementary Materials

S1 Table: Topic guide expert consultations in English language and in Dutch. (DOCX)

GUID: 1E4B97A3-E431-41D9-9504-00FBD157756A

S2 Tabular array: Key components of existing interventions and intervention protocols on palliative intendance and symptom direction for end-phase COPD patients based on explorative literature search. (DOCX)

GUID: 2AD7AD95-A5C2-4BA1-A881-D2CA11308603

S3 Table: Explorative literature search on interventions and intervention protocols. (DOCX)

GUID: E628D64E-BD28-4559-9632-B71030A9A95F

S4 Table: Overview of barriers and facilitators on inclusion criteria and components from the expert consultations. (DOCX)

GUID: 8491A6BF-1A62-4A32-8219-417CFA3258D6

Data Availability Argument

All relevant data are within the paper and its Supporting Information files.

Abstract

Background

Research suggests that palliative domicile care should exist integrated early on into standard care for end-stage COPD patients. Patients also express the wish to be cared for and to dice at home. However, a practice model for early integration of palliative home care (PHC) into standard treat finish-stage COPD has not been fully developed.

Aim

To develop an intervention for early integration of PHC into standard intendance for terminate-stage COPD patients.

Methods

We conducted a Phase 0–I written report according to the Medical Research Council Framework for the development of complex interventions. Stage 0 aimed to identify the inclusion criteria and primal components of the intervention by way of an explorative literature search of interventions, expert consultations, and seven focus groups with general practitioners and community nurses on perceived barriers to and facilitators of early on integrated PHC for COPD. In Phase i, the intervention, its inclusion criteria and its components were adult and farther refined by an skillful panel and 2 good opinions.

Results

Stage 0 resulted in identification of inclusion criteria and components from existing interventions, and barriers to and facilitators of early integration of PHC for end-phase COPD. Based on these findings, a nurse-led intervention was adult in Phase I consisting of preparation for PHC nurses in symptom recognition and physical therapy exercises for end-stage COPD, regular visits by PHC nurses at the patients' homes, two information leaflets on self-management, a semi-structured protocol and follow-up plan to record the outcomes of the home visits, and integration of intendance by enabling collaboration and communication between dwelling and hospital-based professional caregivers.

Conclusion

This Phase 0-I trial succeeded in developing a circuitous intervention for early on integration of PHC for finish-stage COPD. The use of 3 methods in Phase 0 gave reliable data on which to base inclusion criteria and components of the intervention. The preliminary effectiveness, feasibility and acceptability of the intervention will exist subsequently tested in a Phase II study.

Background

Chronic Obstructive Pulmonary Disease (COPD) is one of the leading causes of death[1] and involves a progressive, inexorable functional decline and acute episodes of exacerbation[2]. Stop-stage COPD patients display symptoms including dyspnea, fatigue, anxiety and depression mood, leading to a reduced quality of life[iii]. Even with medical care, these symptoms touch on heavily on daily activities, emotional and social functioning[three] while concrete and psychosocial needs are inadequately addressed[four].

Integrating palliative care (PC) early into regular care could address these unmet needs and could accept a positive impact on end-stage COPD patients[v,half dozen]. Conversations about prognosis should be an integral role of care; strategies for professional caregivers to facilitate these discussions include being aware of the implications of the diagnosis, edifice a proficient human relationship with the patient and starting the discussion of prognosis early in the disease course[7]. While patients with stop-stage COPD often die in intensive intendance unit settings in infirmary rather than at habitation[eight], they really prefer to be cared for at home[nine] and to die at dwelling house[ten]. If PC was provided at dwelling it could improve quality of life[11,12], and increase the chances of dying at home[13].

Moreover, if palliative habitation care (PHC) was provided early on enough it could avoid unnecessary hospital visits and admissions, overly aggressive intendance and excessive end-of-life-related medical costs[fourteen]. Patients with end-stage COPD themselves express the demand for integrated PHC as an addition to standard care[15]. However, implementing PHC early is not without its challenges because the unpredictability of the illness trajectory and survival time can complicate decisions about when to introduce it[v]. There are other challenges e.g. that some professional caregivers view PC for end-stage COPD equally not valuable or believe that PC needs can be addressed by standard care solitary[16].

Furthermore, inquiry on implementing and testing early on integrated PHC in clinical practice for terminate-phase COPD is fairly limited, with studies focusing either on PHC or on early PC, but not on both, except for ane trial that tested credence of domicile support and integrated care among end-stage COPD patients[fifteen]. Other studies and trials explored identify of decease and costs of medical intendance for COPD patients receiving PHC[13], early introduction of specialised PC for COPD[17,18], management of mainly i symptom i.e. breathlessness through PHC[nineteen] or identification tools for stop-phase COPD patients in need of proactive PC[20]. Interventions in cancer enquiry have likewise tested some models of early on and/or integrated PC/PHC demonstrating positive effects on quality of life and quality of care[21–25]. Nevertheless, a practical model to implement early integration of PHC in standard home care for end-stage COPD patients is defective; therefore, our study aim was to develop an prove-based intervention supporting the early on integration of PHC into standard intendance for finish-stage COPD patients.

Methods

Report design

The intervention was developed using the Medical Research Council (MRC) framework for complex intervention blueprint[26]. This framework provides multiples steps (from Phase 0 to Phase Iv) for developing and evaluating complex interventions. The process may take different forms, with several Phases consisting of key functions and activities. The arrows indicate the main interactions between the Phases (Fig 1). Reporting is not shown as a separate activity, because information technology is regarded equally an important element of each stage in the procedure[26]. This written report consists of a Phase 0-I trial involving the identification and modelling of the inclusion criteria, core components of the intervention.

Medical Research Council framework for development and evaluation of circuitous interventions.

Phase 0 –Identifying the evidence base and developing the theory

Three methods were used to obtain information for developing inclusion criteria and key components. Fundamental components—the cadre of the intervention—are intended to exist, and accept been, positively associated with the outcomes that address identified needs[27,28].

The beginning method was an exploration of relevant literature, taking place between April 2015 and November 2016. This search identified published trial results and protocol papers of uncompleted trials on PC and/or symptom management for COPD. The used methodology was an explorative literature search. A search strategy was developed past CS and KC for PubMed. A combination of controlled vocabulary and free text words was used to search in titles and abstracts: COPD and intervention in combination with PC, early PC, full general practitioners (GPs), and symptom management. The reference list of all identified studies was screened for boosted relevant studies. A written report was included if it reported: (i) Intervention results or an intervention protocol (the most recent results of one trial needed to be included), (2) Components related to PC or symptom management for end-phase COPD patients, and (3) Clear reference to inclusion criteria of participants. The eligibility of selected studies was independently assessed past CS and KC, and this selection was then revised by the research team. Appraisement was undertaken by CS and KC by critically reviewing all selected studies. No appraisement tool was used as the design was exploratory and not systematically.

The second method, undertaken between May and September 2016, was to consult experts for their views on possible inclusion criteria and components, based on their experiences and ideas most the future of PHC. 27 national and international experts from either clinical and/or inquiry settings were selected for their research and/or clinical expertise in PC and/or COPD as a benchmark. An extra criterion was stipulated for Belgian experts, namely their noesis near the Belgian and Flemish healthcare context concerning care for COPD, as this was information we could non gather from the literature search and from international experts. By recruiting both experts in PC and/or in COPD we tried to obtain a sample of experts representing a wide range of experience related to the topic (maximum variation sampling). Other international and national experts in COPD and/or PC were recruited through professional contacts of experts nosotros interviewed (snowball sampling). A topic guide in English and in Dutch can be seen in S1 Table.

Thirdly, we conducted focus groups betwixt September 2015 and September 2016 to proceeds more than insight into PHC practices, current standard intendance, barriers to be overcome and facilitators to promote early integration of PHC for cease-stage COPD patients in Flanders, Belgium. This method complemented the previous methods with data about the specific Flemish context of the intervention. The methods of the focus groups are published elsewhere[29].

Phase I: Modelling the intervention for clinical practice

In Stage I, the intervention was modelled[xxx]. Outcomes of the intervention were stipulated to exist improvement in quality of life for stop-stage COPD patients and in quality of care. The inquiry squad adult a showtime draft of a complex intervention, based on the results of Phase 0. The most mutual used and mentioned inclusion criteria and intervention components were selected, while also taking into account the research setting, the Flemish context, possibilities to replicate the intervention, feasibility and acceptability problems. Refinements to this draft were done past i expert panel and ii individual expert opinions who further selected the best courses of activeness in order to enhance implementation. These Flemish experts identified possible implementation barriers which could occur and searched for solutions to overcome these barriers.

Flemish skilful panel and expert opinions for implementation issues

The Flemish experts were selected for knowledge about COPD, either in clinical do, in PHC or in social piece of work. The expert panel and practiced opinions were held in December 2016, of which the console took one and a one-half hour, was audio taped and transcribed verbatim, while the expert opinions were via e-mail service. The good panel (n = viii) consisted of three GPs, a pulmonologist, a pulmonary nurse, a customs nurse (CN) and a psychologist who works in a PHC team. Some of them had also been consulted for Phase 0 in the expert consultations or the focus groups. The two expert opinions were provided by a GP and a social worker. They all went through the draft of the intervention for improvements and adaptations. The inclusion criteria were as well revised on implementation issues past a well-experienced pulmonologist. The obtained information were categorised for each inclusion criterion and component and analysed inside the research squad to finalise the intervention. A catamenia diagram of the methods used from Phase 0 to I is given in Tabular array 1.

Tabular array 1

Employ of the theory and modelling Phase from the Medical Research Council framework.

Definition	Steps undertaken
(1) Phase 0 –theory
(one.one) Identifying the bear witness base of operations by carrying out an explorative literature search	(i) Reviewed existing interventions on palliative care and symptom management for cease-phase COPD patients on their blueprint, components, inclusion criteria, and results on outcomes. (2) Reviewed existing intervention protocols on palliative care and symptom direction for end-stage COPD patients on their design, components, inclusion criteria, and called outcomes.
(1.2) Identifying international and national insights on possible inclusion criteria and core components by carrying out skillful consultations	(i) Interviewed 21 experts on their view well-nigh successful interventions for early integration of palliative home intendance for finish-stage COPD, based on the inclusion criteria and components we identified in the explorative literature search, and on other components the experts identified during the consultations.
(1.iii) Identifying insights on the Flemish context of early on integrated palliative abode care for finish-stage COPD, which could not be derived from 1.1 and 1.2	(i) Conducted three focus group conversations with general practitioners and four with community nurses on barriers and facilitators for early integration of palliative home care for stop-stage COPD patients in Flemish region.
(2) Stage I–modelling the intervention
(2.1) Selecting inclusion criteria by using a pragmatic approach based on the disquisitional consideration of the research team, using the results from Phase 0 and taking into account the Flemish clinical practice context, the research setting, feasibility and acceptability issues	(i) Linked all results on inclusion criteria from the dissimilar methods in Stage 0 and analysedreisbu them. (ii) Selected the nearly common used or positively mentioned inclusion criteria from both literature and expert consultations. (3) Sorted the inclusion criteria on their relevance for the intervention, taking into business relationship the Flemish clinical practice and palliative domicile intendance context by also consulting the obtained results from the focus groups on the facilitator: trigger moments.
(2.2) Selecting intervention components by using a pragmatic arroyo based on the critical consideration of the research team, using the results from Phase 0 and taking into account the Flemish clinical do context, the enquiry setting, feasibility and acceptability issues, and possibilities for replicating it. Outcomes of the intervention should exist improvement of quality of life for finish-stage COPD patients and quality of care.	(i) Linked all results on key components from all methods used in Phase 0 and compared the results. (ii) Identified the nigh common used or positively mentioned components from both literature and adept consultations. (three) Compared the well-nigh common used or positively mentioned components from the literature search and the expert consultations and sorted them on their relevance for the intervention. This was done by taking into account their applicability in the Flemish context as we reviewed the identified barriers and facilitators from the focus grouping study in relation to these components. (iiii) Selected and designed five key components in a outset draft of the intervention, using combinations of components from previous interventions, cloth from previous projects for COPD and new developed components past the research team members themselves.
(2.iii) Identifying implementation problems concerning the chosen inclusion criteria and components specific for the Flemish context	(i) Reviewed the most mutual inclusion and exclusion criteria identified in Phase 0 past a pulmonologist with long feel in clinical practice for finish-stage COPD on implementation issues and feasibility and adapted several criteria for meliorate implementation chances. (two) Consulted the involved palliative home intendance squad on feasibility and acceptability bug of the selected components. (iii) Consulted an skilful panel and two skilful opinions on their views, comments and suggestions of the showtime draft of the intervention, focusing on implementation, feasibility and acceptability bug.
(ii.4) Finalising the intervention model	The inquiry team analysed the obtained remarks from the pulmonologist, involved palliative dwelling care team, adept console and adept opinions and adapted the intervention's inclusion criteria and components in a final typhoon.

Ethical aspects

The research protocol and topic guides for the focus groups were approved past the Ethics Commission of Ghent University Hospital (Reference: 2016/0171).A signed informed consent was obtained from each participant in the focus groups and the proficient consultations, panel and opinions. Anonymity was bodacious by preventing the participants being identified from the transcripts.

Results

Stage 0 –Identifying the evidence base and developing theory

Exploration of relevant literature

From the explorative electronic database search 68 records were identified. After removal of duplicates and irrelevant reports, the title and abstract of 58 records was screened and xxx total-text articles were retrieved for detailed evaluation. Contact with the first authors and a search in reference lists of included articles yielded eight records. Seventeen articles met all inclusion criteria and were included for data-extraction and quality assessment (Fig 2). Xi were intervention studies and vi were intervention protocols.

Total electronic search strategy.

The well-nigh normally used inclusion criteria in the studies were hospitalisation for an exacerbation (recently, one or more times in the last year), finish-stage dyspnea (co-ordinate to the Medical Research Council Dyspnea score) and lung function scores (generally Gold 3/IV) (Table 2).

Table two

Inclusion criteria of interventions and intervention protocols on palliative care and symptom management for end-stage COPD patients based on explorative literature search.

Inclusion criteria	Used x times in explored studies
Hospitalisation for an exacerbation (recently OR 1–2 times in last year(s))	10
End-stage dyspnea (Medial Enquiry Council dyspnea Calibration score 5)	5
Finish-stage COPD (by and large GOLD 3/Four)	v
FEV1 (airflow limited)	3
Age	iii
Smoking habits (ex-smoker or intending to quit/current or former smoker)	3
Hypercapnia/hypoxemia	2
BMI (<21)	2
Complimentary of exacerbation terminal month	2
Housebound	1
Inhalation therapy	1
Domiciliary oxygen/ habitation ventilation	1
Surprise question (volition die within one year or readmission within viii weeks)	ane
Comorbidity	1
Infirmary Anxiety and Depression Calibration score > = 8	1
Visit for pulmonary follow-up	one

The most used central components in the analysed studies were (1) advance care planning: training GPs[31] and respiratory nurses[32], or testing whether advance care planning afflicted the end-stage COPD patient'due south decision-making almost future preferences[33]; (ii) respiratory rehabilitation: elementary habitation and intensive hospital-based pulmonary rehabilitation programmes[34], the involvement of respiratory health workers[35] or the integration of respiratory services with standard care therapy[6]; (3) specialised PC: specialised PC added to standard care[18,20]; (4) training professional caregivers: training GPs in early identification of end-stage COPD patients in need of PC, training on communication most preferences and written advance directives[31] or grooming on inhalation techniques[36]; (5) educating end-stage COPD patients: educating stop-stage COPD patients about identification and treatment of exacerbations[37], decision-making in end-of-life care[38] or cerebral restructuring where patients learn to translate physical and psychological symptoms virtually anxiety and dyspnea[39], and (6) improving self-management of end-phase COPD patients: using telemonitoring for symptom reporting[40], developing a breathlessness service for managing breathlessness[nineteen,41] or using an action plan with a holistic assessment of concrete, psychological, social and spiritual/existential needs[42]. A broader overview of the key components derived from the explorative literature search can be seen in S2 Table, and in-detail examination of it in S3 Tabular array.

Expert consultations

Of the 27 experts invited for consultation, 21 accepted the invitation. Nine were from Belgium, of whom six had expertise in PC and three in COPD. Twelve were from other countries, of whom seven were PC experts, two were experts in COPD, and 3 were experts in both PC and COPD. Experts were pulmonary specialists, a physiotherapist, experienced researchers, policymakers, people working in a PHC unit and GPs. (Table 3).

Tabular array 3

Characteristics of consulted experts.

Expert number	Profession	Country	Expertise
1	Palliative home intendance caput nurse Coordinator palliative abode care team	Belgium	Palliative care
2	Palliative home care nurse	Kingdom of belgium	Palliative care
three	General practitioner Palliative domicile intendance medico Scientific researcher	Belgium	Palliative care
iv	General practitioner Scientific researcher	Belgium	Palliative care
5	General practitioner Scientific researcher	Kingdom of belgium	COPD
6	General practitioner Scientific researcher	Belgium	Palliative care
7	Pulmonary physician Scientific researcher	Belgium	COPD
8	Pulmonary physiotherapist	Kingdom of belgium	COPD
nine	Respiratory medico Scientific researcher	Switzerland	Palliative care COPD
10	General practitioner Palliative home care dr.	Belgium	Palliative care
eleven	Respiratory dr. Scientific researcher	Commonwealth of australia	COPD
12	Respiratory physician	Australia	Palliative care COPD
xiii	Respiratory physician Scientific researcher	Spain	Palliative care
14	Palliative care md Scientific researcher	Spain	Palliative care
15	Researcher social sciences	Frg	Palliative care
16	Palliative care doctor Researcher medical scientific discipline	Canada	Palliative care
17	Member of a Scientific Institute Professor in medicine	United kingdom	Palliative care
18	Member of an expertise centre in Palliative Intendance Researcher in hurting and palliative medicine	Netherlands	Palliative care
xix	Scientific researcher	Netherlands	Palliative care
20	Scientific researcher	United Kingdom	Palliative care COPD
21	Respiratory and sleep dr.	Australia	COPD

The experts considered inclusion and exclusion criteria by suggesting which criterion indicated PHC needs, and which not. They mentioned positive (facilitators) and negative (barriers) comments for each criterion. The most mutual mentioned inclusion criteria were: after access in hospital for exacerbation (8 experts in favor), depending on lung office exam (eight in favor, simply also six not in favor), depending of operation of the patient (4 in favor) and being housebound (three in favor) (Table four).

Table iv

Summary of possible inclusion criteria and components for early integration of palliative home care according to good consultations.

Inclusion criteria	Facilitators mentioned by experts*						Barriers mentioned by experts*
	A	B	C	D	East	Total	A	B	C	D	E	Total
After admission in infirmary for exacerbation			12, 22	fourteen, xvi, 17, 19, 20	21	8		4	22			two
Functioning of the patient			22	fourteen, 16	ten	iv						0
Depending on lung function test		iv	12, 22	xiv, 15, 16, eighteen, 19		8	9	4		15, sixteen, nineteen, 20		6
Depending of social context						0				16		i
Stance of caregiver	7					1						0
Being housebound			12	14, xvi		iii			22			1
Oxygen dependency			12, 22			two						0
Component	Facilitators mentioned past experts*						Barriers mentioned by experts*
	A	B	C	D	E	Total	A	B	C	D	E	Total
Advance Care Planning	5	1, 2, 3, 4, 11	12, 22	15, 17, eighteen, 19, 20	xiii	14	5	3, 11	12, 22	xv, 20	13, 21	nine
Involvement of informal caregivers	ix		12, 22	15, 16	21	6	9		22	16		3
Knowledge and illness-insight	9	1, 2, 11	22	fifteen, 17, eighteen	ten	9				15	10	two
Pulmonary rehabilitation	9	1, two, 3, 4	22	17, 18	21	nine	nine			17, 18	21	4
Psychosocial back up	5	1, two, half dozen		14, 15, xvi, 17, 18	10, 21	11		3		14, xv, 16		iv
Self-direction		one, 2	22	15, 17, eighteen	ten, 21	8				15, 16		two
Symptom control		i, ii, 3, 4, 11	12	15, 17, xviii	10, 21	xi						0

Possible components were discussed: advance intendance planning, psychosocial back up and symptom control were recommended respectively by xiv, eleven and eleven experts, although advance care planning was also seen as less suitable by nine and the benefits of psychosocial support were questioned by four. Increasing the patient'due south knowledge and illness insight and providing pulmonary rehabilitation were each recommended by ix experts but barriers were likewise mentioned by respectively two and four. Viii experts stressed the importance of incorporating cocky-management into the intervention, while ii reported barriers to that. Lastly, six experts saw possibilities for the interest of informal caregivers in a PHC intervention, and 3 questioned it (Table 4). S4 Table provides an in-detail description of the mentioned barriers and facilitators for inclusion criteria and components.

Focus groups

Three focus groups with GPs (north = viii, northward = 8, n = x) and iv with CNs (n = iv, due north = seven, n = five, due north = 12) were held. The categories of barriers related to early integration of PHC were (1) Unpredictable exacerbations and death in COPD and invisible deterioration of operation; (2) Perceived patient attitudes such as a lack of disease insight and resistance towards care; (three) Professional caregiver practices with a lack of a coherent and proactive plan, insufficient feel and a negative view of PHC for end-phase COPD; (4) Not plenty focus on cognition and advantages of PHC and PC for end-stage COPD in professional person caregivers' basic and continuing education; (5) Healthcare and PHC organisation characteristics: too short consultations, insufficient coordination betwixt hospital and home care, and a reimbursement organization for PHC that is based on life expectancy; and (vi) Advice: a lack of and unclear communication betwixt professional caregivers about further intendance possibilities for end-phase COPD patients, and a lack of clear data about PHC between professional caregivers and their patients.

The categories of facilitators were (one) Trigger moments to showtime talking about early integration of PHC such as after hospitalisation, after a couple of exacerbations, when an end-stage COPD patient becomes oxygen-dependent or becomes housebound; (two) Involvement of breezy caregivers in early integrated PHC for COPD; (3) Information about the advantages of early on integrated PHC for terminate-phase COPD in professional person caregivers' educational activity; (4) Including advance care planning as a part of healthcare and PHC systems and (5) Communication: enhancing communication betwixt professional caregivers by installing a intendance coordinator, and betwixt professional caregivers and end-phase COPD patients by explaining better and in a practical way early integrated PHC. The elaborate results are published elsewhere[29].

Phase I: Modelling process and outcomes

Inclusion criteria

The most common used or mentioned inclusion criteria from literature and expert consultations were cross referenced to Flemish and clinical implementation issues. Lung role tests (GOLD III and GOLD IV[43]) were selected as a basic inclusion criterion to identify the finish-stage of COPD. Next, as recommendations from Gilded[43] and the results in Phase 0 also stipulated that lowering of performance and frequent exacerbations are evenly of import predictors of terminate-stage COPD, nosotros decided to combine lung function tests with two (in case of GOLD III) or ane (in case of Golden IV) criteria/benchmark representing frequent and severe exacerbations (three or more hospitalisations for COPD in the past three years) or lowering of functioning (oxygen-dependent, COPD Cess Test-scale ≥25, Medical Research Quango dyspnea-scale of 4, intubation or non-invasive ventilation in the past year, low Body Mass Index or center failure New York Eye Clan of three). Past designing the criteria in this fashion, nosotros tried to incorporate the various ways end-stage COPD could occur. The selected exclusion criteria reflect a patient able to participate in the study such as region of residence, Dutch speaking and no or low cognitive impairment. Nosotros also excluded active cancers as patients would otherwise take a higher run a risk of referral to PHC considering of their cancer diagnosis (Table 5).

Table v

Final choice of inclusion and exclusion criteria.

Inclusion criteria

Exclusion criteria

Aureate Iii (cf. Gilt 2017[43]) and ≥ ii of following criteria OR Gilded Four (cf. GOLD 2017[43]) and ≥1 of post-obit criteria: ➢ Oxygen-dependent[44] ➢ Three or more than hospitalisations for COPD in the past 3 years ➢ COPD Assessment Test -scale ≥25[43] ➢ Medical Research Quango Scale Dyspnea iv ➢ Intubation in the past year ➢ Non-invasive ventilation in the past year ➢ Body Mass Index ≤18 ➢ New York Hart Clan- scale of 3

Patients living outside the region Ghent-Eeklo, Flemish region, Belgium (where the intervention will take place) Patients in the last days of life (bedbound and/or semi-comatose and/or take only fluid and/or no longer able to take oral drugs[18]) Patients with cognitive impairment: Mini Mental status Examination ≤23 at the day of inclusion of patients[45] Lung cancer diagnosis Patients with agile cancer Patients who are not living at dwelling any more Patients with no cognition of Dutch Patients with a full general practitioner already involved in this report for an intervention/control group patient

Components

The five final components were developed by combining all results from Phase 0. Predefined outcomes for the intervention were improving quality of life for end-stage COPD patients and quality of care. Therefore, we prioritised the most common used or mentioned components from the literature and practiced consultations: advance care planning, pulmonary rehabilitation, patients' knowledge and disease-insight and symptom control. The results also suggested to include the interest of breezy caregivers, psychosocial back up and self-direction as a component. Furthermore, the results from the focus grouping study revealed that advance intendance planning, training professional caregivers, increasing knowledge about COPD and PHC for patients and involving breezy caregivers could enhance early integrated PHC. Well-nigh all these components were included in the get-go draft of the design, representing a holistic PHC arroyo[42].

Yet, the last choice of components took into account the Flemish context of PHC, feasibility bug for the involved PHC squad and for the research setting, replication possibilities for other studies and implementation problems in clinical practise. Pulmonary rehabilitation was therefore excluded equally a component on its own, equally this was non feasible for the involved PHC team of the intervention. Also, advance care planning and involving breezy caregivers were combined in one component. As PHC teams in Flanders already offer advance care planning and support for informal caregivers as standard PHC, we chose to focus the component more on a systematic reporting tool nearly these subjects, every bit this withal defective in their electric current care management.

After the content of the intervention was decided, we modelled and further operationalised it into five physical components using elements from previous interventions and projects as well new ideas from the research squad. Farther adjustments were fabricated by the skilful panel and expert opinions. The components are: (1) Training of the PHC team in intendance for stop-phase COPD patients, (2) Monthly home visits by a PHC nurse, (3) Information leaflets, (iv) A semi-structured protocol for abode visits, and (5) Integration of intendance betwixt involved professional person caregivers.

Component 1—Preparation of the PHC team in intendance for stop-phase COPD patients: Training in noesis and care for patients with stop-stage COPD volition be provided to the nurses of the PHC team, who expressed the demand for this. The PHC team will also acquire to work with the semi-structured protocol and the information leaflets. The expert panel confirmed the demand for training the team and agreed on the topics (see infra) included in the training. I proficient brash the inclusion of information on the value of concrete activity and dietary advice as many cease-stage COPD patients suffer from nutritional deficiencies and low musculus mass. The research squad decided to include this recommendation. The topics of training will be:

• - Providing information on the disease trajectory of COPD and the symptom burden for end-stage COPD patients

• - Recognising and managing an exacerbation

• - Providing information about the role of exercise, animate exercises, coping with the illness and self-management skills

• - Learning to work with the semi-structured protocol that will exist used during abode visits

• - Learning to work with the information leaflets 'Breathing and saving free energy' and 'Preventing and coping with complaints'

Component 2—Home visits by a PHC nurse: Home visits by a PHC nurse are already part of PHC equally usual to support the patient and their informal caregivers. However, end-stage COPD patients are not receiving PHC visits systematically in Flanders and if so, it is mainly in the terminal phase[46]. In Stage 0, it became clear from the literature[47] that end-stage COPD patients demand more systematic support for their symptoms and concerns, and not but in the terminal phase. Therefore, systematic home visits by a PHC nurse are incorporated as a component with a minimum frequency of one per month over a flow of six months in total, which tin be increased if more than follow-upwardly would be needed. This was seen as appropriate by the expert panel.

Component 3—Data leaflets: In current PHC exercise in Flanders, tools for patients' self-management, cognition and illness insight are insufficiently used, although this could vary amid PHC teams. In dissimilarity, both the literature[19,41] and our expert consultations provided evidence for the benefits of appending self-management tools in PHC for end-stage COPD patients. Therefore, information leaflets on self-direction of COPD symptoms were selected as an component. The leaflets will be offered to the patient during PHC visits. The practiced panel recommended that Flemish leaflets should exist used to improve comprehensibility for Flemish people, but as there were none in existence at the time, Dutch-translated leaflets from the 'Living well with COPD' Canadian project, originally developed in English, were chosen[48]. This projection is a Canadian learning method for COPD patients and their families. It focuses on raising awareness and knowledge about COPD and on educational activity patients possible coping mechanisms, breathing exercises, knowledge and utilise of medication. The Dutch-translated leaflets were developed for patients living in the netherlands and contain therefore information eastward.thousand. brand names of medication only bachelor in the Netherlands. Following the expert panel's advise, we replaced this with a listing of medication available in Belgium. Likewise, some words used in the Dutch-translated leaflets are non used in Flemish, but as we considered the full general content very clear for Flemish speaking patients, this was left unchanged. Notwithstanding, nosotros will analyse this possible bias in the feasibility and acceptability study from the Stage II intervention.

Component iv –Semi-structured protocol during habitation visits: Currently, most PHC teams in Flemish region do not use a standardised registration document listing and reporting all possible topics of care and support covered during domicile visits. PHC nurses also lack cognition nearly the specific symptom brunt in cease-stage COPD. Nosotros therefore developed a semi-structured protocol for reporting nigh a pre-defined list of COPD-related care and back up management topics during home visits. The structure of the protocol is inspired by the interventions of Weber et al[17], Buckingham et al[42] and Vanbutsele et al[23] and contains nine focus areas, representing a holistic PHC approach: disease-insight and coping, symptom management (flagged past completing The Dutch version of the Edmonton Symptom Cess Scale (ESAS)), care planning, support for informal caregivers, psychosocial support, spiritual support, other not-predefined support e.g. fiscal, applied and administrative, coordination of care and an action plan (Table 6). The expert panel recommended changing some words from the Dutch ESAS into Flemish in order to amend interpretation. They also added 'tightness in the chest' adjacent to 'breathlessness' as the former referred to another symptom than the latter.

Table 6

Focus areas in the semi-structured protocol for the palliative home care nurse.

Focus area	Explanation
Disease insight and coping	Anamnesis of the affliction and the patient Listening to the patient'due south experience of his/her dyspnea Information about dyspnea and COPD (through conversation and info-leaflets) and medication (if needed)
Symptom management	Standard care package of the palliative domicile care team Cess of symptoms (ESAS)
Intendance planning	Values and wishes of the patient for the future Preferences for end-of-life care (for instance about hospitalisations) Living will/accelerate directive
Support for those close to the person who is dying (if needed)	Identification of those closest to the person Assessment of their needs Providing available resource if needed
Psychosocial support	Assessment of needs (psychological, social, financial, authoritative, activities of daily living) Providing available resources if needed If needed, referral to other professional person caregivers or social workers if patients agrees
Spiritual/existential back up	Assessment of needs (how he/she run into the future, who he/she become existential/spiritual support from, if there are detail worries) Providing bachelor back up
Other support	Cess of other concerns or needs (for example: practical needs related to housing) Follow-up of issues if help can be given
Coordination of care	Listing all involved professional caregivers, their part, treatment goals and interventions Involving professional person caregivers in the follow-up of the patient and their vision on further care Communication about coordination of care with the involved general practitioner
Action plan	Listing agreed actions the patient can undertake to tackle certain problems, identified in one or more of the other focus areas Patient, full general practitioner, community nurse, physiotherapist and pulmonologist receive an overview of these actions subsequently each visit

Component 5 –Integration of care betwixt involved professional caregivers: Current PHC in Flanders does not employ standard reporting or communication procedures between PHC nurses and other professional person caregivers, except for regular contact with the GP, who instigates PHC. As seen in Phase 0, the focus groups stressed the need for a care coordinator to install a proactive care plan every bit conflicting treatment between professional person caregivers ofttimes occurs. Consequently, the component 'integration of care' will systematise report mechanisms and communication between the PHC nurses and involved professional person caregivers. With the agreement of the patient, the PHC nurse will send a report of the semi-structured protocol with the action programme and the overview of the coordination after each domicile visit to the GP, CN, physiotherapist and pulmonologist. The GPs will be particularly involved as the PHC nurse will ever contact them if further action or care is needed and if important changes in the health status of the patient would occur. An overview of how the last components were derived from the Phase 0 results can exist seen in Tabular array 7.

Table vii

Describing components of an intervention to integrate palliative dwelling care early on in standard care for finish-phase COPD patients.

Component i: Training of the palliative domicile care team in care for cease-stage COPD patients
Caption of the component	Barriers and facilitators addressed past the component
Five nurses of the palliative home care team who will execute the intervention will follow a one-half-day training grade on treat COPD patients. This is to prepare them for the intervention with COPD patients every bit the majority of those they currently back up are cancer patients. A pulmonologist and a pulmonary physiotherapist/smoking abeyance consultant from Ghent Academy hospital will give this part of the preparation. Some other role volition consist of learning to use the intervention tools (information leaflets and semi-structured protocol: see infra nether component 3 and component 4) every bit the palliative home intendance nurses are not experienced in using them. This will be given by the executive researcher of the study, a sociologist from Ghent University.	➢ No experience in clinical practise with palliative care for COPD (focus group—barrier) ➢ Not enough focus on cognition and advantages of palliative care for COPD in basic and standing education (focus group- bulwark) ➢ More than focus on early integration of PHC for COPD and concrete implementation in clinical practice in education for professional caregivers (focus group facilitator) ➢ Training professional person caregivers on early identification of patients in need of palliative care and structuring advance care planning (literature)
Component 2: monthly dwelling visits past a palliative home care nurse
Explanation of the component	Barriers and facilitators addressed by the component
After the general practitioner has been brought into contact with the palliative home care nurse and the patient has been discharged at to the lowest degree two weeks from hospital (if the inclusion happened during hospitalisation), the patient will encounter the palliative dwelling care nurse during a kickoff habitation visit where the palliative home care nurse volition introduce himself/herself and explain what the palliative home intendance squad can do for the patient during the intervention. Following this introductory visit, the palliative abode care nurse volition plan home visits at least once a month for a period of six months in total, the length of the study. If more than acceptable follow-upwards is needed, a higher frequency of visits will be given.	➢ Specialised palliative care consultations integrated with standard intendance (literature) ➢ Palliative status for palliative abode care is based on predictability of death (focus grouping-barrier) ➢ Palliative reimbursement of palliative home care is restricted to 3 months (focus grouping- barrier) ➢ Not enough time during consultations to get-go talking virtually palliative care and further care (focus group–barrier) ➢ Non discussing palliative care (needs) in particular during consultations with the end-stage COPD patient (focus group-barrier) ➢ Professional caregivers fear talking about palliative home care considering of the patient's reaction (focus grouping-barrier) ➢ Difficulties for professional person caregivers to talk about palliative care needs with their end-phase COPD patients (focus grouping-barrier)
Component 3: Information leaflets
Caption of the component	Barriers and facilitators addressed by the component
A palliative home care nurse volition give, during i or more of the home visits, two information leaflets to the patient. The data leaflets have the goal to raise awareness and cognition most COPD and to inform the patient on possible coping mechanisms. These information leaflets are Dutch-translated from the originally English language leaflets and are role of the Canadian 'Living well with COPD' projection, which is a learning method for patients and their families. Titles of the information leaflets are 'Preclude and coping with complaints' and 'Animate and saving energy'. The palliative home care nurse volition explicate the information leaflets during visit one and visit 2 (and in instance of lack of fourth dimension during visit 3) as good equally possible to the patient and teach the patient how to utilise it. It is recommended to commencement with 'Preclude and coping with complaints' and and then 'breathing and saving energy'.	➢ Educating patients with COPD (literature) ➢ Cocky-management of patients with COPD (literature) ➢ Not understanding the severity of the illness or realizing the possibility of decease (focus group- barrier) ➢ Deprival of the severity of the affliction (focus group- barrier) ➢ Inform patients clearly and firmly about their disease and the future (focus group–facilitator) ➢ Knowledge and illness insight (expert consultations)
Component iv: Semi-structured protocol during home visits
Caption of the component	Barriers and facilitators addressed by the component
During each visit, the palliative domicile care nurse will use a semi-structured protocol to structure the visit and report virtually information technology (run into Table 6). This semi-structured protocol will tackle the following areas: affliction-insight and coping, symptom direction, care planning, back up for informal caregivers, psychosocial back up (psychological, financial and administrative), spiritual support, other not-predefined support, an activeness plan and coordination of intendance. During every visit, the palliative home care nurse volition fill in the semi-structured protocol, which will comprise make full-in boxes for the nine focus areas, a box to notation down actions and how many minutes of their visit were spent on each area. An action program and a intendance programme will be included also and will exist updated during each visit.	➢ Communication between caregiver and patient (focus group–barrier)     ◦ Not discussing palliative intendance (needs) in detail during consultations with the patient     ◦ Difficulties for professional caregivers to talk well-nigh end-of-life preferences and palliative care needs with patients     ◦ Patient-relative relationship can prevent communication well-nigh palliative intendance     ◦ Professional caregivers fear talking about palliative intendance because of the patient's reaction ➢ Increment knowledge about advantages of palliative home care for breezy caregivers of patients with COPD (focus group–facilitator) ➢ Start accelerate care planning as a standard process for all astringent COPD patients living at home (FG—facilitator) ➢ Advice between caregiver and the patient (focus group–facilitator)     ◦ Talking most practical matters can help the doctor start talking about palliative care     ◦ Better caption of the term palliative home intendance tin aid credence by patient ➢ Advance intendance planning as a part of palliative care (literature) ➢ Cocky-management of patients with COPD (literature) ➢ Accelerate intendance planning equally a component of palliative care trials (expert consultations) ➢ Psychosocial support (expert consultations) ➢ Symptom command (skilful consultations) ➢ Involvement of those close to the patient (proficient consultations)
Component 5: Integration of care betwixt involved professional caregivers
Caption of the component	Barriers and facilitators addressed by the component
The palliative dwelling care team, responsible general practitioner, community nurse, physiotherapist and pulmonologist systematically receive, if the patient agrees, a study of every visit with a summary of the assessments and agreed deportment. The palliative home intendance nurse sends this study directly to them through electronic mail or post. The general practitioner(and if needed other relevant professional caregivers such as the community nurses) will be contacted past the palliative domicile care nurse to develop the care plan for the patient. If needed, any medical interventions by other professional caregivers tin exist coordinated together with the responsible full general practitioner.	➢ Lack of a coherent and proactive intendance programme (focus group barrier)     ◦ No cooperation between professional caregivers involved at home     ◦ Conflicting therapy and treatment between professional caregivers ➢ Interprofessional communication (focus group barrier)     ◦ Not knowing each other well enough for proper advice     ◦ Unclear who takes initiative to introduce PHC to the patient     ◦ Not agreement each other's messages ➢ Communication betwixt professional person caregivers: engage a care coordinator who facilitates the intendance transition to palliative domicile care (focus grouping–facilitator)

Give-and-take

Summary of the results

In this article we described the development and modelling of an intervention of early integrated palliative habitation care (PHC) for end-phase Chronic Obstructive Pulmonary Disease (COPD) patients. Predefined outcomes were improvement in quality of life for end-stage COPD patients and quality of intendance. Phase 0 resulted in the identification of possible inclusion criteria, components, barriers to and facilitators for early on integration of PHC for end-stage COPD. Based on these findings, in Phase I, a nurse-led intervention was adult with inclusion criteria representing PHC needs and a decline in functioning. V components were modelled: (ane) Training on symptom recognition and physical therapy exercises for the involved PHC team; (two) Regular home visits by PHC nurses; (3) Two data leaflets on self-management of COPD; (4) A semi-structured protocol to tape the outcomes of the PHC visits and (5) Integration of care by encouraging collaboration and communication between involved professional caregivers in master and secondary intendance.

Strengths and weaknesses

A key strength was conducting a Phase 0–I study co-ordinate to the Medical Inquiry Council (MRC)-framework, every bit this provided a high-quality structured and phased procedure towards the development of a complex intervention[28]. This is confirmed by previous interventions on cease-of-life care and advance intendance planning[6,27]. To our noesis this is also the outset nurse-led intervention exploring early integration of PHC for end-stage COPD, past combining several components with a holistic PHC approach.

I limitation is that nosotros did not directly consult the perspectives of end-stage COPD patients and their informal caregivers in Phase 0 whereas the primary focus was in fact to gain insight into care possibilities for early integration of PHC. The views of end-stage COPD patients on PHC take been captured in previous inquiry[15], although without taking into account the specific Flemish context. All the same, interviews with half of the patients and informal caregivers from the intervention grouping volition be conducted in the Phase II evaluation study, where their perspectives on the intervention components and on possible improvements for a Phase III intervention trial will be explored.

Another limitation is that nosotros did not included pulmonary rehabilitation as a separate component despite recommendations from expert consultations and literature, in the form of physical therapy sessions[34] or for breathlessness relief[half-dozen]. This was decided because pulmonary rehabilitation is formally non included in Flemish PHC services and the involved PHC nurses who will execute the intervention are not experienced with it. Withal, we included rehabilitation techniques and breathing exercises in the component 'preparation for the PHC team' and the PHC squad will refer the patient to a pulmonary physiotherapist if needed. Furthermore, in the Phase 2 evaluation study, the necessity of incorporating it as a component in future interventions volition be evaluated.

Comparing with existing literature

The component 'semi-structured protocol' was developed using combined elements from three previous interventions. The components of Weber et al[18] were used for shaping the content of the focus areas: symptom control, spiritual/existential, psychosocial and back up for informal caregivers, knowledge about the affliction and coordination of care. The components of Buckingham's intervention[42] added a concrete self-management tool in the course of an action plan. From Vanbutsele'due south et al [23] intervention nosotros took the structure of the semi-structured protocol certificate, with indications of how long (in minutes) a PHC nurse will discuss one topic. This led to a semi-structured protocol which encompasses a complete care back up programme.

When comparing the intervention with report results in a contempo review[v] about PC and symptom direction for COPD, similarities and differences occurred. The review summarised current bear witness on how symptoms and concerns in COPD could exist addressed using PC interventions, and also deduced potential models for integrative working e.grand. symptom-triggered services, curt-term integrated PC, advanced COPD clinics and integrated respiratory care services (pulmonary rehabilitation, early supported discharge, hospital at home etc.). The findings indicated that these models could be triggered by indications for PC such as complex troublesome symptoms, a hospitalisation, change in place of residence, acute inpatient care for respiratory failure and the beginning of oxygen therapy. In the concurrently, respiratory medicine and primary care could be offered simultaneously to the patient[5]. These suggested models focused mainly on managing specific symptoms such as breathlessness; which differed from the holistic focus of our intervention. A similarity is that the review supported early integration of PC with standard respiratory services. In our intervention pulmonologists will also receive monthly reports from the PHC nurse and will be able to co-decide, with the PHC nurse, nigh certain actions for the patient.

Implications for research, education and practice

Future research could focus on evaluating results of PHC interventions for cease-phase COPD, and on analysing procedures and difficulties in enrolling and developing these interventions. Phase Two interventions should also report more feasibility and acceptability results of participants, and could actively involve the latter in the development and evaluation phases. Currently, there is a lack of knowledge well-nigh all these aspects. Not simply is the number of interventions on PHC for finish-phase COPD low, published interventions also frequently fail to report study procedures, which impedes replication of interventions in other contexts. More reviews like Maddocks et al[5], that proved its usefulness for in-sight information about trials and studies well-nigh PC for end-phase COPD, could provide this defective data.

Furthermore, our results imply that more knowledge about care and back up for end-phase COPD is needed for PHC nurses, just also for general practitioners (GPs) and customs nurses. Accent on this topic should be provided in bones didactics with the possibility of learning skills in clinical practice. Farther didactics on PHC should also include more illness specific support, for example learning breathing exercises for terminate-phase COPD, and should thus not be express to intendance and support for cancer patients. In clinical exercise for end-stage COPD, the roles of involved professional person caregivers could be re-evaluated, past training PHC nurses better in providing pulmonary rehabilitation or education physiotherapists ameliorate in intendance for end-stage COPD. Early on PHC for end-phase COPD, opposed to PHC given in the final stages of life or PHC for cancer, might likewise benefit from the involvement of pulmonary physiotherapists and psychologists besides PHC nurses.

Conclusion

This Stage 0-I process succeeded in developing a complex intervention for early on integration of PHC into standard care for end-stage COPD patients. Three methods in Phase 0 gave reliable information with inclusion criteria and components for an intervention focused on holistic PHC. The feasibility, acceptability and preliminary effectiveness of the intervention will be subsequently tested in a Stage Ii study.

Supporting data

S1 Table

Topic guide expert consultations in English and in Dutch.

(DOCX)

S2 Table

Key components of existing interventions and intervention protocols on palliative care and symptom management for end-stage COPD patients based on explorative literature search.

(DOCX)

S3 Table

Explorative literature search on interventions and intervention protocols.

(DOCX)

S4 Tabular array

Overview of barriers and facilitators on inclusion criteria and components from the adept consultations.

(DOCX)

Acknowledgments

The authors would like to thank all participating experts, full general practitioners and customs nurses for their efforts in providing data, Naomi Dhollander, MSc, for organising the focus groups, and Jane Ruthven for her language editing.

Funding Statement

Funded by IWT - Agentschap voor Innovatie door Wetenschap en Technologie & SBO - Strategisch Footing Onderzoek: 140009 (received: LD).

Data Availability

All relevant information are within the paper and its Supporting Information files.

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Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6145576/

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