Patient organizations and primary care development: reflections by patients with chronic diseases

Berglund, Bo; Westerlund, Irene

doi:10.35680/2372-0247.1138

Cited by 6 publications

(3 citation statements)

References 17 publications

(23 reference statements)

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“…34 2.4. Data analysis using an inductive approach 35 in the qualitative analysis of interviews, using the grounded theory approach, conducted jointly by the academic researchers and the patients and parents in the research group. 36 The coding of each interview using NVivo® by a researcher, in collaboration with a patient or parent, allowed the identification and aggregation of units of meaning.…”

Section: Methodsmentioning

confidence: 99%

Collaborative Research Protocol to Define Patient-Reported Experience Measures of the Cystic Fibrosis Care Pathway in France: The ExPaParM Study

Bertrand

FANCHINI

Rault

et al. 2021

Preprint

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Introduction In France, the cystic fibrosis (CF) care pathway is coordinated by multidisciplinary teams from specialised CF centres or transplant centres. It includes the care provided at home or out of hospital, risk prevention in daily life and adjustments to social life, which together contribute to the person’s quality of life. Patient experience is used to describe and evaluate the care and life of patients living with the disease. Objectives Our collaborative research aims to identify the most significant areas and criteria that characterise the CF pathway. It will lead to the development of a questionnaire to collect patients' experience, which can be administered to all patients or parents of children registered and followed in the centres. The article describes the protocol developed in partnership with patients and parents of children living with the disease. Method A multidisciplinary research group brings together researchers, patients, parents of children with CF and health care professionals. The patient partnership is involved in the 4 phases of the protocol: 1) setting up the study, recruiting patient and parent co-researchers, training them in qualitative research methods, defining the situations and profiles of patients in the study population, elaborating the protocol; 2) selecting the study sites, recruiting participants, carrying out semi-structured interviews, analysing verbatims using the grounded theory approach; 3) co-elaborating Patient-Reported Experience Measures (PREM) questionnaires adapted to the 4 types of participants: parents, adolescents, non-transplanted adults and transplanted adults; 4) validating the construct with participants and professionals from the study centres. Results The protocol obtained a favourable opinion from the Ethics Evaluation Committee of INSERM (IRB00003888 - no. 20-700). Training was provided to the 5 patients and 2 parent co-researchers to enable them to participate effectively in the research. Eleven centres participated in the recruitment of participants in mainland France and Reunion Island. Eighty hours of interviews were conducted. Discussion The PREM questionnaires will have to undergo psychometric validation before being used by the actors of the CF network to assess the impact on the care pathways of quality approaches or new therapies available in cystic fibrosis.

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Section: Methodsmentioning

confidence: 99%

Collaborative Research Protocol to Define Patient-Reported Experience Measures of the Cystic Fibrosis Care Pathway in France: The ExPaParM Study

Bertrand

FANCHINI

Rault

et al. 2021

Preprint

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“…Patients diagnosed with a chronic disease feel disappointed with the quality of care, lack of availability of human resources, poor access to information, and inadequate responsiveness in the health care system [2,3]. They are interested in assuming a greater role in the management of their treatments [4]. Strategies that encourage patient involvement in managing their illness help to achieve the best possible care for the patient, streamline the work of healthcare providers, and shape health policies [5,6].…”

Section: Introductionmentioning

confidence: 99%

“…They serve as an administrative link. They are funded by the government and health system [4]. They work to empower patients [6] and improve their health [15].…”

Section: Introductionmentioning

confidence: 99%

Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations

Zigdon

Eckhaus²,

Zigdon

et al. 2022

Preprint

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Background: Evidence suggests that Patient Organizations (POs) are an important support factor in chronically ill patients' coping with their illness. This support differs significantly in topic, type, and style from the physician support, and they complement each other. Also, the chronically ill Patients' perspective on the activities and services offered by patient organizations has yet to be evaluated. This study aimed to identify and map the services and activities of all types of non-profit POs from the general chronically ill patient's perspective. Methods: Nineteen services and activities of POs were sampled from the activities of patient organizations in Israel and from scientific literature and evaluated by chronically ill patients in Israel. Questionnaires were distributed among patients with chronic diseases (N=1395) using snowball sampling. Results: Exploratory factor analysis (EFA) was performed, followed by confirmatory factor analysis (CFA) for convergent and discriminant validity. Findings showed that twelve services and activities suggested by patient organizations were found to represent chronically ill patients' needs and categorized into three groups: Interpersonal support (five items), patients' rights (three items), and medical information (four items).CFA showed a good fit for the observed data. CFI = 0.98, NFI = 0.97, TLI = 0.96, RMSEA = 0.058. Conclusions: Patient organizations complement services and activities that are not available in health systems. However, patient organizations need to tailor their services and activities to the needs of chronically ill patients, to whom they provide the services, in a beneficial manner that will allow them to maximize their ability to better manage their disease.

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Seasonal influenza vaccination among cancer patients: A systematic review and meta-analysis of the determinants

Okoli

Lam

Abdulwahid

et al. 2021

Current Problems in Cancer

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Patient organizations and primary care development: reflections by patients with chronic diseases

Cited by 6 publications

References 17 publications

Collaborative Research Protocol to Define Patient-Reported Experience Measures of the Cystic Fibrosis Care Pathway in France: The ExPaParM Study

Collaborative Research Protocol to Define Patient-Reported Experience Measures of the Cystic Fibrosis Care Pathway in France: The ExPaParM Study

Chronically ill Patients’ Perspectives on Support Services and Activities of Patient Organizations

Seasonal influenza vaccination among cancer patients: A systematic review and meta-analysis of the determinants

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