Dataset Information

Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.

ABSTRACT:

Background

Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.

Methods

Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.

Results

Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.

Conclusions

The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.

SUBMITTER: Broughton J

PROVIDER: S-EPMC5457632 | biostudies-literature | 2017 Jun

REPOSITORIES: biostudies-literature

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Publications

Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.

Broughton Jessica J Harris Sarah S Beasant Lucy L Crawley Esther E Collin Simon M SM

BMC health services research 20170602 1

<h4>Background</h4>Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.<h4>Methods</h4>Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison tec ...[more]

PMID: 28576141

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Project description:NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described.We described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2-5 years after assessment at 7 of the 11 specialist services.Baseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was 'very much' or 'much better' for 27.5% (115/418) of patients, 'a little better' for 36.6% (153/418), 'no change' for 15.8% (66/418), 'a little worse' for 12.2% (51/418), and 'worse' or 'very much worse' for 7.9% (33/418). Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded "Yes" to "Do you think that you are still suffering from CFS/ME?" 8.9% (34/383) were "Uncertain", and 5.7% (22/383) responded "No".This multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.

Project description:ObjectiveTo assess the impact of reorganisation of neonatal specialist care services in England after a UK Department of Health report in 2003.DesignA population-wide observational comparison of outcomes over two epochs, before and after the establishment of managed clinical neonatal networks.SettingEpoch one: 294 maternity and neonatal units in England, Wales, and Northern Ireland, 1 September 1998 to 31 August 2000, as reported by the Confidential Enquiry into Stillbirths and Sudden Deaths in Infancy Project 27/28. Epoch two: 146 neonatal units in England contributing data to the National Neonatal Research Database at the Neonatal Data Analysis Unit, 1 January 2009 to 31 December 2010.ParticipantsBabies born at a gestational age of 27(+0)-28(+6) (weeks+days): 3522 live births in epoch one; 2919 babies admitted to a neonatal unit within 28 days of birth in epoch two.InterventionThe national reorganisation of neonatal services into managed clinical networks.Main outcome measuresThe proportion of babies born at hospitals providing the highest volume of neonatal specialist care (≥ 2000 neonatal intensive care days annually), having an acute transfer (within the first 24 hours after birth) and/or a late transfer (between 24 hours and 28 days after birth) to another hospital, assessed by change in distribution of transfer category ("none," "acute," "late"), and babies from multiple births separated by transfer. For acute transfers in epoch two, the level of specialist neonatal care provided at the destination hospital (British Association of Perinatal Medicine criteria).ResultsAfter reorganisation, there were increases in the proportions of babies born at 27-28 weeks' gestation in hospitals providing the highest volume of neonatal specialist care (18% (631/3495) v 49% (1325/2724); odds ratio 4.30, 95% confidence interval 3.83 to 4.82; P<0.001) and in acute and late postnatal transfers (7% (235) v 12% (360) and 18% (579) v 22% (640), respectively; P<0.001). There was no significant change in the proportion of babies from multiple births separated by transfer (33% (39) v 29% (38); 0.86, 0.50 to 1.46; P=0.57). In epoch two, 32% of acute transfers were to a neonatal unit providing either an equivalent (n=87) or lower (n=26) level of specialist care.ConclusionsThere is evidence of some improvement in the delivery of neonatal specialist care after reorganisation. The increase in acute transfers in epoch two, in conjunction with the high proportion transferred to a neonatal unit providing an equivalent or lower level of specialist care, and the continued separation of babies from multiple births, are indicative of poor coordination between maternity and neonatal services to facilitate in utero transfer before delivery, and continuing inadequacies in capacity of intensive care cots. Historical data representing epoch one are available only in aggregate form, preventing examination of temporal trends or confounding factors. This limits the extent to which differences between epochs can be attributed to reorganisation and highlights the importance of routine, prospective data collection for evaluation of future health service reorganisations.

Project description:ObjectivesPatient medicines helpline services (PMHS) are available from some National Health Service (NHS) Trusts in the UK to provide medicines information to hospital patients and carers. To date, studies of PMHS have examined the views of service users via satisfaction surveys. This study used qualitative methods to explore service users' experiences of using a PMHS, including perceived benefits and areas for improvement.DesignQualitative, using semi-structured interviews.SettingThis study was conducted across seven NHS Trusts in England.ParticipantsForty users of PMHS were individually interviewed over the telephone. Interviews were audio-recorded, transcribed verbatim and analysed using Braun and Clarke's inductive reflexive thematic analysis. Ethical approval was obtained before study commencement.ResultsParticipants predominantly called a PMHS for themselves (82%; carers: 18%). Two main themes were generated. Theme 1: timeliness-PMHS provide support during the uncertain transition of care period from hospital to home, when patients and carers often feel vulnerable because support is less available. PMHS met service users' needs for timely and easily accessible support, and quick resolution of their issues. PMHS could be improved with staffing beyond typical work week hours, and by having staff available to answer calls instead of using an answerphone. Theme 2: PMHS are best-placed to help-PMHS were perceived as best-placed to answer enquiries that arose from hospital care. Service users felt reassured from speaking to pharmacy professionals, and PMHS were perceived as the optimal service in terms of knowledge and expertise regarding medicines-related questions. However, several participants were initially unaware that their PMHS existed.ConclusionsPMHS are perceived to be a valuable means of accessing timely medicines-related support when patients and carers may be feeling particularly vulnerable. However, their availability and promotion could be improved. We recommend that providers of PMHS consider whether this is achievable, in order to better meet the needs of service users.

Project description:BACKGROUND:Patient medicines helpline services (PMHS) have been established at some National Health Service (NHS) Trusts in England, with the aim of providing medicines-related support to patients after they have been discharged. Addressing an important knowledge gap, this qualitative study sought to examine pharmacy professionals' experiences and perceptions of their PMHS, including perceived benefits of the services, and areas for improvement. METHODS:Invitations to participate were sent to all NHS Trusts within England that were known to provide a PMHS (n?=?117). Semi-structured interviews were conducted via telephone with 34 pharmacy professionals who provide a PMHS (female?=?76%, male?=?24%; predominantly from Acute NHS Trusts, 76%). Interviews were audio-recorded and transcribed verbatim. The RE-AIM framework for evaluating interventions (RE-AIM: Reach, Effectiveness, Adoption, Implementation, Maintenance) informed the development of the interview schedule and the analysis of the data using framework analysis. RESULTS:Two themes were generated from the analysis: Resources, and Perceived benefits. Findings illustrate how providing a PMHS with limited resources (e.g., no specific funding, understaffed) negatively impacts the implementation, maintenance and reach of PMHS, and the ability to evidence their effectiveness. Despite operating with limited resources, PMHS are considered to have many benefits for patients and healthcare organisations (e.g., providing a 'safety net' to patients during the transfer of care period, providing reassurance to patients, helping to optimise patients' medicines, resolving medicines-related errors, reducing the burden upon other services, and providing the potential to improve hospital services based upon the content of enquiries). However, actually establishing the effectiveness and cost-effectiveness of PMHS is challenging due to perceived logistical difficulties of collecting data, and the difficulty measuring hard outcomes (e.g., prevention of readmissions). CONCLUSIONS:PMHS are typically perceived to be under-resourced, although they are considered by pharmacy professionals to have several benefits for service users and NHS Trusts. For those sites that provide a PMHS, we recommend using enquiry data to improve hospital services, and to share ideas for implementing and maintaining a PMHS within a resource-limited context. High-quality research is needed to evidence the effectiveness and cost-effectiveness of PMHS, which may help to secure adequate resources for this service in the future.

Project description:Background An increasing number of children with complex health needs are being educated in mainstream classes. CFS/ME is a complex and disabling condition, and there is little guidance on how primary school teachers can support younger children with this condition. To improve care, it is important to understand what these children need in the school setting, and the barriers and facilitators to teachers providing this support. The aims for this qualitative study were to explore teachers’ views about CFS/ME, their experiences of supporting a pupil with CFS/ME and their perspectives on the barriers and facilitators to providing support. Methods We recruited families from an NHS specialist paediatric CFS/ME service and families were eligible if the child was aged between 5 and 11?years and had a diagnosis of CFS/ME. We gained written consent/assent from families to invite the child’s teacher to participate in a qualitative interview. We contacted these teachers, gained written consent and then carried out semi-structured qualitative interviews. Interviews were audio-recorded, transcribed, anonymised and analysed thematically. Interviews took place between July 2018 and December 2018. Results We interviewed 11 teachers; their pupil’s age ranged from 5 to 11?years and school attendance ranged from 0 to 80%. Theme 1: Most teachers provided rich descriptions of their pupil’s CFS/ME; they consistently described cognitive dysfunction and significant fatigue, but beyond this the symptoms varied from one account to the next (from mobility problems, to aches and pains, digestive problems, headaches, nausea and hypersensitivity). These teachers noted the ripple effects on their pupil’s social, emotional and academic functioning. Two of the eleven teachers said that they did not observe symptoms of CFS/ME, expressing a degree of scepticism about the diagnosis. Theme 2: Teachers described a close relationship with their pupil. They said they understood the individual needs of the child and portrayed positive and proactive attitudes towards providing support. The type of support provided included facilitating rest breaks and limiting strenuous activities; using practical strategies to address cognitive, physical, social and emotional difficulties; maintaining a connection with the child during their absences from school; and encouraging the child to talk about their health and wellbeing. Teachers noted that receiving formal confirmation of the child’s diagnosis enabled them to put this support in place. Theme 3: The adaptations they described were often intuitive, rather than being based on a knowledge of CFS/ME. Teachers wanted more resources to increase their understanding of the condition and its management. Conclusions Primary school teachers want to provide effective support for children with CFS/ME. Clinical services should consider working in collaboration with teachers to equip them with evidence-based strategies for CFS/ME management in the primary school setting. Supplementary Information The online version contains supplementary material available at 10.1186/s12887-020-02461-7.

Project description:BackgroundPaediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a relatively common and disabling condition. The National Institute for Health and Clinical Excellence (NICE) recommends Cognitive Behavioural Therapy (CBT) as a treatment option for paediatric CFS/ME because there is good evidence that it is effective. Despite this, most young people in the UK are unable to access local specialist CBT for CFS/ME. A randomised controlled trial (RCT) showed FITNET was effective in the Netherlands but we do not know if it is effective in the National Health Service (NHS) or if it is cost-effective. This trial will investigate whether FITNET-NHS is clinically effective and cost-effective in the NHS.MethodsSeven hundred and thirty-four paediatric patients (aged 11-17 years) with CFS/ ME will be randomised (1:1) to receive either FITNET-NHS (online CBT) or Activity Management (delivered via video call). The internal pilot study will use integrated qualitative methods to examine the feasibility of recruitment and the acceptability of treatment. The full trial will assess whether FITNET-NHS is clinically effective and cost-effective. The primary outcome is disability at 6 months, measured using the SF-36-PFS (Physical Function Scale) questionnaire. Cost-effectiveness is measured via cost-utility analysis from an NHS perspective. Secondary subgroup analysis will investigate the effectiveness of FITNET-NHS in those with co-morbid mood disorders.DiscussionIf FITNET-NHS is found to be feasible and acceptable (internal pilot) and effective and cost-effective (full trial), its provision by the NHS has the potential to deliver substantial health gains for the large number of young people suffering from CFS/ME but unable to access treatment because there is no local specialist service. This trial will provide further evidence evaluating the delivery of online CBT to young people with chronic conditions.Trial registrationISRCTN registry, registration number: ISRCTN18020851 . Registered on 4 August 2016.

Dataset Information

Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.

Background

Methods

Results

Conclusions

Publications

Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England.

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