NETS^1HDstudy: development of a Hirschsprung’s disease core outcome set

Abstract

ObjectiveThe objective of this study was to develop a Hirschsprung’s disease (HD) core outcome set (COS).MethodsCandidate outcomes were identified from a systematic review and stakeholder nomination. A three-phase Delphi process and consensus meeting were used to prioritise candidate outcomes based on scores assigned by stakeholder participants using a nine-point scale. In phases two and three, participants were shown graphical representations of their panel’s scores and all panels’ scores respectively for each outcome from the previous phase. After the third phase, outcomes prioritised by two or three panels were taken forward to the consensus meeting. The COS was formed from the 10 highest scoring outcomes meeting the threshold for inclusion (≥70% 7–9 and <15% 1–3).ResultsEighty-nine stakeholders (82%) completed all three phases of the Delphi process. Seventy-four outcomes were assessed in phase one of the Delphi process, the following 10 of which met criteria for inclusion in the COS: (1) death with cause specified, (2) long-term faecal incontinence, (3) long-term voluntary bowel movements without need for enemas, or rectal or colonic irrigation, (4) long-term psychological stress for the individual with Hirschsprung’s disease, (5) long-term urinary incontinence, (6) objective score of quality of life, (7) objective score of bowel function, (8) unplanned reoperation, (9) >need for a permanent stoma, (10) enterocolitis.ConclusionsThis HD COS is formed of 10 outcomes deemed important by key stakeholders. Use of this COS in research will reduce outcome reporting heterogeneity and increase our ability to identify gold standard treatments for HD.

Comprehensive Geriatric Assessment in hospital and hospital-at-home settings: a mixed-methods study

“…In the final version of the CGA Delphi, we included statements that ≥ 69% of participants from both panels scored as 7-9 and < 15% scored as 1-3. 119 We excluded the following criteria from the final version of the CGA Delphi: mild or moderate frailty, having more than one long-term condition, social isolation or care home residents as criteria to target the delivery of the CGA, hospital length of stay as an Non-medical areas nominated in round 1 (and scored in round 2) that might be included in the assessment…”

“…We planned to use a cut-off point of ≥ 70% participants scoring 7-9 (really important) and < 15% scoring 1-3 (not important) to determine the statements to include in the final version of the Delphi. 119,120 We reduced this to ≥ 69% because of a large number of statements receiving a score of very important from 69% of participants; it is not unusual for this type of post hoc pragmatic decision to be taken in Delphi exercises. 120…”

Recruiting and retaining participants in e-Delphi surveys for core outcome set development: Evaluating the COMiT'ID study

“…For the COMiT’ID study, personalised email invitations were the most effective method in terms of numbers of consented participants. This is also a common approach used in other studies which have high response rate [ 7 – 12 ; 14 ; 15 ]. This indicates that to be successful, COS developers need to access experts through the appropriate infrastructure including professional networks and patient organisations.…”

“…Retention rates throughout the iterative e-Delphi process to the final round have not been reported consistently in the literature [ 4 ] but, for those that do, the numbers of participants recruited and retained remain highly variable from study to study. For example, the size of several recent international e-Delphi surveys recruiting multi-stakeholder groups that include healthcare users (members of the public) can range from 39 to 838 participants completing the final round, with retention rates of 19.5 to 87.1% [ 7 – 15 ]. Small group size and high attrition rates can impact on the final results.…”

“…E-Delphi surveys used for COS development tend not to report in detail study recruitment and retention methods, nor to evaluate their effectiveness [ 4 , 7 – 15 ]. A series of workshops engaged COS developers to explore what principles, methods and strategies they might want to consider when seeking healthcare user input into the development of a COS [ 3 ].…”