Tag: health needs

Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multi-system disease that significantly deteriorates the quality of life for those affected. There is no established effective treatment, and a lack of research on what is needed by severely affected young people with ME/CFS and their caring parents to cope with the disease. The aim of this study was to investigate the needs of young people affected and their parents in order to subsequently build a tailored treatment model for this age group upon this basis.

Methods: Needs were explored using topic-guided focus groups and an adapted diary method. Patients participated either in an online focus group with five sessions discussing needs related to five topics (sports/physical activity/mobility, self-care, mental activity, social contacts, and school/vocational training/study/profession) or in the adaptive diary approach, receiving and answering the same stimuli and questions in the format of voice and text messages. Additionally, focus groups with parents comprised two sessions each, targeting needs of their children and themselves, respectively. Data were analysed by reflexive thematic analysis.

Results: We included 14 young people with ME/CFS (aged 12 to 25 years), of whom five participated in a focus group and nine in the adaptive diary approach. Eighteen parents took part in three focus groups, including three couples. In the patient sample, four themes of unmet needs were identified: (i) not being left alone with the disease, (ii) flexibility and understanding of healthcare providers and authorities, (iii) having to explain oneself less to others, and (iv) appreciation of the family filling part of the healthcare gap. Among parents, the following four themes were revealed: (i) not being left alone with the disease, (ii) health care adapted to ME/CFS, (iii) knowledge, understanding, and acceptance of ME/CFS, and (iv) confidence in dealing with ME/CFS.

Conclusions: The needs of young people with ME/CFS and their parents, respectively, overlap clearly and demonstrate the importance of a needs-based adaptation of healthcare services.

Source: Kircher A, Mayer-Huber S, Eberhartinger M, Mihatsch L, Apfelbacher C, Stojanov S, Behrends U. Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany. BMC Public Health. 2026 Sep 29;26(1):2942. doi: 10.1186/s12889-026-29549-6. PMID: 42864639; PMCID: PMC13656452. https://pmc.ncbi.nlm.nih.gov/articles/PMC13656452/ (Full text)

Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME)

Abstract:

Background: To co-produce the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) with patients and clinicians, and to assess its content validity.

Methods: Guided by the COSMIN guidelines, a draft CNAME was devised from relevant literature and lived experience. It was revised following piloting and cognitive interviews with the advisory groups and then completed online by people with ME. Content and face validity were assessed via deductive framework analysis of participants’ feedback. Construct validity (in terms of relevance, duplication and comprehensibility) was assessed using frequencies, cross-tabulations and response rates, respectively. As the CNAME produces dichotomous (yes/no or not relevant) data, which are not summated and are not intended for repeated use, further psychometric analyses are not possible or relevant.

Results: Four hundred people with ME participated. Comprehensibility was excellent (> 97.5% item completion rate). There were no floor effects, but several items had a ceiling effect and were removed. Eight items demonstrated duplication and were combined. Participant feedback was positive, confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete.

Conclusions: The Clinical Needs Assessment for ME is a valid, feasible and acceptable measure of people with ME/CFS’ clinical needs.

Patient and public contribution: Development of the CNAME was a patient-led project (both the authors live with ME/CFS) and it was co-produced by people with ME/CFS and clinicians working in NHS specialist ME/CFS services. People with ME/CFS and clinicians were involved in all stages of the study-conceptualisation, design, conduct, analysis, interpretation and dissemination.

Source: Tyson SF, Fleming R. Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME). Health Expect. 2026 Oct;29(5):e70854. doi: 10.1111/hex.70854. PMID: 42649108; PMCID: PMC13518227. https://pmc.ncbi.nlm.nih.gov/articles/PMC13518227/ (Full text)

‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis

Abstract:

BACKGROUND: Myalgic encephalomyelitis (ME) is a mysterious and controversial condition. Debate has centred upon its causation, and the purchasing question-which services to commission for people with ME-has not been addressed.

METHODS: A health needs assessment was made of people with ME in Wakefield, based upon published (including grey) literature, and local informants.

RESULTS: Previous studies have mostly reflected institutional outbreaks; local needs will reflect community, sporadic cases but there is little information about these. The very wide estimates of prevalence (between zero and 57000 for a district the size of Wakefield) indicate a fundamental problem over the validity of the concept of ME. Four sets of health needs emerged from the literature and from local informants: a medical diagnosis, rest, specific treatments and social care. All four are highly debatable.

CONCLUSION: There are no proven services or interventions which the health authority should purchase for people with ME. Purchasing, being a blunt tool for service change, is unlikely to improve health care given the disagreements over the condition.

 

Source: Sutton GC. ‘Too tired to go to the support group’: a health needs assessment of myalgic encephalomyelitis. J Public Health Med. 1996 Sep;18(3):343-9. http://jpubhealth.oxfordjournals.org/content/18/3/343.long (Full article)