A pilot evaluation of interventions to support the emotional and psychological needs of patients with end-stage renal disease Presentation to UK Kidney Week, 2014 Dr Gill Combes, Francesca Taylor, Dr Jennifer Hare, Professor Richard Lilford University of Birmingham and The Royal Wolverhampton NHS Trust “The research (was funded by and took place) at the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West Midlands.” Background More than one-third of patients in a recent study found the transition to dialysis traumatic/scary (Combes et al, 2013) Health professionals don’t fully recognise emotional impact of dialysis (Bass et al, 1999; Weisbord et al, 2007; Schell et al, 2012) Discussion with consultants suggests emotional issues not discussed for fear of lengthening consultation times or not being able to deal with the issues raised Literature suggests emotional and psychological wellbeing impacts on physical health of renal patients Little data on effectiveness of low-level interventions Aim of the pilot study To evaluate whether two simple pilot interventions can encourage consultants to talk with patients about their emotional feelings and concerns in routine consultations Interventions 1) Adaptation of NICE evidence-based question recommended for people with long-term conditions: “During the last few weeks have you been feeling down or miserable at all?” 2) Patient Issues sheet for patients to use in the waiting room to identify 2-3 issues they want to talk about: • • emotional issues: feeling down, adjusting to dialysis, acceptance, nervous, sadness, hope, worry about the future, enjoying life, coping blank circles to add own issues 3) Consultants trained by a renal psychologist in how to handle issues raised by patients Interventions 1) Adaptation of NICE evidence-based question recommended for people with long-term conditions: “During the last few weeks have you been feeling down or miserable at all?” 2) Patient Issues sheet for patients to use in the waiting room to identify 2-3 issues they want to talk about: • • emotional issues: feeling down, adjusting to dialysis, acceptance, nervous, sadness, hope, worry about the future, enjoying life, coping blank circles to add own issues 3) Consultants trained by a renal psychologist in how to handle issues raised by patients Interventions 1) Adaptation of NICE evidence-based question recommended for people with long-term conditions: “During the last few weeks have you been feeling down or miserable at all?” 2) Patient Issues sheet for patients to use in the waiting room to identify 2-3 issues they want to talk about: • • emotional issues: feeling down, adjusting to dialysis, acceptance, nervous, sadness, hope, worry about the future, enjoying life, coping blank circles to add own issues 3) Consultants trained by a renal psychologist in how to handle issues raised by patients Methods Qualitative pilot evaluation in 2 renal units in the West Midlands in 2013 Patients recruited for research into their most recent consultation Patients on dialysis for less than 12 months Patients randomly allocated to one of the two interventions Semi-structured telephone interviews with 36 patients (27 site 1, 9 site 2) Face-to-face interviews with 5 consultants (3 site 1, 2 site 2) Patients’ needs More than a third of patients reported emotional issues Traumatic stages: initial diagnosis; transition to dialysis Little awareness of low-level support available Wanted better emotional and psychological support • • • • accepting diagnosis and need for dialysis adjusting to the burden of dialysis treatment dealing with uncertainty handling treatment related problems Barriers for patients Forgetting what they wanted to ask about once they get into the consultant’s room Lacking confidence to raise emotional issues Fear of being seen as having depression, being put on medication or experiencing stigma Not realising emotional issues could be discussed – not what usually happens Not having an on-going relationship with the consultant Fearing the consultant won’t be empathetic Perceived time constraint NICE question Most patients liked the question • • • felt cared for emotionally encouraged expression of worries helpful for consultant to know how I feel Dislikes: could imply depression; not seen as necessary 96% patients thought it should be used routinely Consultants tended to adapt the question Consultants had mixed views: • • • enabled better understanding of patients’ well-being helped identify patients with emotional needs potential negative impact on ‘mood’ of the consultation Patient Issues sheet Patients liked the sheet • • • aide memoire informative about renal patients’ experiences encouraged issues to be raised and discussed PI sheet used in variety of ways Most patients needed the consultant to prompt them to use the sheet Mostly used at the end of the consultation Consultants viewed it favourably • • • • • simple and easy to use, good use of waiting time helped patients focus on what they wanted from consultation valuable prompt about specific issues didn’t lengthen consultation time surprised that most patients needed prompting to use it How the issues were handled • Patients generally satisfied with how consultants handled the issues • comforted that consultant took time to discuss issues • experienced sense of empathy • for some, first time had spoken of the concern • Felt less supported if consultant used practical or problem-solving approaches rather than listening and empathy • Some dissatisfied if consultant closed down the issue quickly or stuck to usual agenda Conclusions Both interventions encouraged discussion of emotional concerns Consultants’ responses to patients’ issues well received by most patients, but less so if focussed on ‘solving’ emotional issues in practical ways Consultation time not lengthened Potential for a bigger study to see if such interventions result in better outcomes for patients Conclusions : guidance to consultants The status quo doesn’t work for most patients Interventions are required and are likely to work best when consultants also promote disclosure and ease discussion Consultants can help promote disclosure and ease discussion by: • • • • • letting patients know emotional difficulties are common asking direct questions about emotions and worries showing empathy and using encouraging body language listening more and holding back on ‘solving’ the problem having on-going discussions with patients about emotional issues from one consultation to the next
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