Evidence map›Paper›PMID 32350085›Full record

SynthesisEuropean respiratory review : an official journal of the European Respiratory Society2020

The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review.

Joanna Y T Lee, Gabriella Tikellis, Tamera J Corte, Nicole S Goh, Gregory J Keir, Lissa Spencer, Debra Sandford, Yet H Khor, Ian Glaspole, John Price and 5 more

Registry-linked trialAbstract readSystematic Review
PubMed Full text at PMC Publisher
In one paragraph

Synthesis in European respiratory review : an official journal of the European Respiratory Society, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06459011 (TAKINGCARE - TAcKlING the Needs of Carers of People With Chronic respirAtoRy disEases), which is not on this map. Cited by 54 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
54citing papers in PubMed, 5 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT06459011 recruitingnot on this mapstarted 2024, after this paper: background citation

TAKINGCARE - TAcKlING the Needs of Carers of People With Chronic respirAtoRy disEases

TypeobservationalSponsorAveiro UniversityRan2024 to 2028Enrolled250ConditionsChronic Respiratory Disease
3 · Its place in the literature

Who cites it

54 citing papers in PubMed, 5 syntheses or guidelines pooled it.

  1. The effect of graded exercise therapy on fatigue in people with serious respiratory illness: a systematic review.European respiratory review : an official journal of the European Respiratory Society · 2024
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  19. Making Sense of Dyspnea in Interstitial Lung Disease.Annals of the American Thoracic Society · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Joanna Y T LeePhysiotherapy, La Trobe University, Melbourne, Australia.ORCID https://orcid.org/0000-0003-2567-6990
Gabriella TikellisPhysiotherapy, La Trobe University, Melbourne, Australia.
Tamera J CorteNHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia.
Nicole S GohAustin Health, Heidelberg, Australia.
Gregory J KeirPrincess Alexandra Hospital, Woolloongabba, Australia.
Lissa SpencerThe University of Sydney, Sydney, Australia.
Debra SandfordRoyal Adelaide Hospital, Adelaide, Australia.
Yet H KhorAustin Health, Heidelberg, Australia.ORCID https://orcid.org/0000-0002-5434-9342
Ian GlaspoleAllergy, Immunology and Respiratory Medicine, Monash University, Melbourne, Australia.ORCID https://orcid.org/0000-0002-5118-2890
John PriceInstitute for Respiratory Health, Nedlands, Australia.
Alison J Hey-CunninghamNHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia.
Jamie MaloneyLung Foundation Australia, Brisbane, Australia.
Alan K Y TeohNHMRC Centre of Research Excellence in Pulmonary Fibrosis, Sydney, Australia.
Alice L WatsonPhysiotherapy, La Trobe University, Melbourne, Australia.
Anne E HollandPhysiotherapy, La Trobe University, Melbourne, Australia a.holland@alfred.org.au.ORCID https://orcid.org/0000-0003-2061-845X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPeople with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers.

methodsA systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method.

resultsA total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of "access to care" was identified that had not been specified

conclusionPeople with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.

Indexed as

Health Services AccessibilityHealth Services Needs and DemandNeeds AssessmentPatient-Centered CareAdaptation, PsychologicalCaregiversCost of IllnessEmotionsHealth Knowledge, Attitudes, PracticeHumansPatient Education as TopicPrognosisPulmonary FibrosisSocial Support

Identifiers

PMID32350085
PMCPMC9488682

What OpenQuestion holds

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.