A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Cochrane Database of Systematic Reviews
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
Pharmacological Interventions For Pain In Children And Adolescents With Life-limiting Conditions
Drug Efficacy; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; 52-26-6 (morphine); 57-27-2 (morphine); 73-78-9 (lidocaine); 76-42-6 (oxycodone); 76-57-3 (codeine); 76-99-3 (methadone); 94-09-7 (benzocaine); 94-24-6 (tetracaine); 103-90-2 (paracetamol); 124-90-3 (oxycodone); 125-56-4 (methadone); 133-16-4 (chloroprocaine); 136-47-0 (tetracaine); 137-58-6 (lidocaine); 297-88-1 (methadone); 437-38-7 (fentanyl); 1095-90-5 (methadone); 1134-47-0 (baclofen); 1333-08-0 (benzocaine); 2180-92-9 (bupivacaine); 3858-89-7 (chloroprocaine); 15307-79-6 (diclofenac); 15307-86-5 (diclofenac); 15687-27-1 (ibuprofen); 18010-40-7 (bupivacaine); 23142-53-2 (methadone); 24847-67-4 (lidocaine); 31121-93-4 (ibuprofen); 38396-39-3 (bupivacaine); 40391-99-9 (pamidronic Acid); 52485-79-7 (buprenorphine); 53152-21-9 (buprenorphine); 55750-21-5 (bupivacaine); 56934-02-2 (lidocaine); 57248-88-1 (pamidronic Acid); 66376-36-1 (alendronic Acid); 74103-06-3 (ketorolac); 79261-49-7 (ibuprofen); 527688-20-6 (ibuprofen); Alendronic Acid/ct [clinical Trial]; Alendronic Acid/dt [drug Therapy]; Analgesia; Baclofen/ct [clinical Trial]; Baclofen/dt [drug Therapy]; Benzocaine/ct [clinical Trial]; Benzocaine/dt [drug Therapy]; Bupivacaine/ct [clinical Trial]; Bupivacaine/dt [drug Therapy]; Buprenorphine/ct [clinical Trial]; Buprenorphine/dt [drug Therapy]; Cerebral Palsy; Chloroprocaine/ct [clinical Trial]; Chloroprocaine/dt [drug Therapy]; Codeine/ct [clinical Trial]; Codeine/dt [drug Therapy]; Diclofenac/ct [clinical Trial]; Diclofenac/dt [drug Therapy]; Drug Clearance; Drug Safety; Fentanyl/ct [clinical Trial]; Fentanyl/dt [drug Therapy]; Functional Status; Human; Ibuprofen/ct [clinical Trial]; Ibuprofen/dt [drug Therapy]; Ketorolac/ct [clinical Trial]; Ketorolac/dt [drug Therapy]; Length Of Stay; Lidocaine/ct [clinical Trial]; Lidocaine/dt [drug Therapy]; Methadone/ct [clinical Trial]; Methadone/dt [drug Therapy]; Morphine/ct [clinical Trial]; Morphine/dt [drug Therapy]; Neuropathic Pain/dt [drug Therapy]; Nociceptive Pain/dt [drug Therapy]; Osteogenesis Imperfecta; Oxycodone/ct [clinical Trial]; Oxycodone/dt [drug Therapy]; Pain Intensity; Pain Severity; Pamidronic Acid/ct [clinical Trial]; Pamidronic Acid/dt [drug Therapy]; Paracetamol/ct [clinical Trial]; Paracetamol/dt [drug Therapy]; Priority Journal; Psychological Well-being; Quality Of Life; Randomized Controlled Trial (topic); Review; Risk Benefit Analysis; Tetracaine/ct [clinical Trial]; Tetracaine/dt [drug Therapy]; Treatment Outcome
Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed, however the evidence base to guide clinicians is limited. There is a clear need for evidence from a systematic review to inform prescribing. Objectives: To evaluate the evidence on the effectiveness of different pharmacological interventions used for pain in CYP with LLCs. Search methods: The following electronic databases were searched up to December 2014: CENTRAL (in the Cochrane Library), MEDLINE, EMBASE, PsycINFO and CINAHL. In addition, we searched conference proceedings and reference lists of included studies. For completeness, we also contacted experts in the field. No language restrictions were applied. Selection criteria: Randomised controlled trials (RCTs), quasi-randomised studies and other studies that included a clearly defined comparator group were included. The studies investigated pharmacological treatments for pain associated with LLCs in CYP. The treatment included those specifically developed to treat pain and those that acted as an adjuvant, where the treatment was not primarily developed to treat pain but has pain relieving properties. The LLC was identified by its inclusion in the Richard Hain Directory of LLCs. Data collection and analysis: Citations were screened by five review authors. Data were extracted by one review author and checked by a second. Two review authors assessed the risk of bias of included studies. A sufficient number of studies using homogeneous outcomes was not identified so a meta-analysis was not possible. Main results: We identified 24,704 citations from our database search. Nine trials with 379 participants fulfilled our inclusion criteria. Participants had cerebral palsy (CP) in five of the studies and osteogenesis imperfecta (OI) in the other four. Participants across the trials ranged in age from 2 to 19 years. All studies, apart from one cross-over trial, were parallel designed RCTs. Three of the trials on CP evaluated intrathecal baclofen (ITB) and two botulinum toxin A (BoNT-A). All of the OI trials evaluated the use of bisphosphonates (two alendronate and one pamidronate). No trials were identified that evaluated a commonly used analgesic in this patient group. Pain was a secondary outcome in five of the eight identified studies. Overall the quality of the trials was mixed. Only one study involved over 100 participants. For the two ITB studies for pain in CP, in the same study population but assessed at different time points in their disease, both found an effect on pain favouring the intervention compared to the control group (standard care or placebo) (mean difference (MD) 4.20, 95% confidence interval (CI) 2.15 to 6.25; MD 26.60, 95% CI 2.61 to 50.59, respectively). In these studies most of the adverse events related to the procedure or device for administration rather than the drug, such as swelling at the pump site. In one trial there were also eight serious adverse effects; these included difficulty swallowing and an epileptic seizure. The trial did not state if these occurred in the intervention group. At follow-up in both BoNT-A trials there was no evidence of a difference in pain between the trial arms among CP participants. The adverse events in the BoNT-A trials mostly involved those who received the intervention drug and involved seizures. Gastrointestinal problems were the most frequent adverse event in those who received alendronate. The trial investigating pamidronate found no evidence of a difference in pain compared to the control group. No adverse events were reported in this trial. Authors' conclusions: Published, controlled evidence on the pharmacological interventions for pain in CYP with LLCs is limited. The evidence that is currently available evaluated pain largely as a secondary outcome and the drugs used were all adjuvants and not always commonly used in general paediatric palliative care for p
Beecham E; Candy B; Howard R; McCulloch R; Laddie J; Rees H; Vickerstaff V; Bluebond-Langner M; Jones L
Cochrane Database Of Systematic Reviews
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1002/14651858.CD010750.pub2