• Development and validation of the satisfaction with treatment for pain questionnaire (STPQ) among patients with sickle cell disease

      Bij, Deepali; Kapadi, Romaana; Schofield, Malcolm B.; Osias, Arlene; Khalid, Nosheen; Kaya, Banu; Telfer, Paul; Elander, James; University of Derby (Wiley, 2019-06-23)
      A brief measure of patient satisfaction with treatment for pain is needed to help improve the treatment of painful episodes caused by sickle cell disease (SCD), especially during and after the transition from paediatric to adult care. Focus groups of 28 adolescent and adult patients were consulted about the content, clarity and relevance of 30 potential items, resulting in an 18-item version. This was validated by analysing questionnaire responses from 120 patients aged 12-53 years. Confirmatory factor analysis and item analysis indicated five subscales with high internal reliability: ‘Communication and Involvement’ (6 items, α=0.87); ‘Respect and Dignity’ (3 items, α=0.82); ‘Pain Control’ (3 items, α=0.91); ‘Staff Attitudes and Behaviour’ (4 items, α=0.88); and ‘Overall Satisfaction’ (2 items, α=0.85); plus a Total Satisfaction score (18 items, α=0.96). High negative correlations with the Picker Patient Experience Questionnaire, a measure of problem experiences, indicated good convergent validity. Lower satisfaction scores among patients aged over 18 years, those admitted via the emergency department, those treated by non-specialist hospital staff, and those reporting more breakthrough pain indicated good concurrent validity. The questionnaire provides a convenient brief measure that can be used to inform and evaluate improvements in healthcare for adolescent and adult patients with SCD, and could potentially be adapted for other painful conditions.
    • Pain management and symptoms of substance dependence among patients with sickle cell disease

      Elander, James; Lusher, Joanne; Bevan, David; Telfer, Paul; University of Derby (2003)
      Concerns about dependence on prescribed analgesia may compromise pain management, but there was previously little reliable evidence about substance dependence among patients with sickle cell disease (SCD). We conducted indepth, semi-structured interviews with SCD patients in London, UK, to assess DSM-IV symptoms of substance dependence and abuse. Criteria were applied to differentiate between pain-related symptoms, which corresponded to the DSM-IV symptoms but involved analgesics used to control pain, and non-pain-related symptoms, which involved analgesic use beyond pain management. Pain-related symptoms are informative about how the pattern of recurrent acute pain in SCD may make patients vulnerable to perceptions of drug dependence. Non-pain-related symptoms are informative about more stringently defined dependence on analgesia in SCD. Inter-rater reliability was high, with mean Kappa coefficients of 0.67–0.88. The criteria could be used to assess analgesic dependence in other painful conditions. Pain-related symptoms were more frequent, accounting for 88% of all symptoms reported. When pain-related symptoms were included in the assessment, 31% of the sample met the DSM-IV criteria for substance dependence, compared with only 2% when the assessment was restricted to non-pain-related symptoms. Qualitative analysis of participants’ descriptions of analgesic use showed that active coping attempts (attempts to anticipate pain and avoid hospital admissions) and awareness of dependence were themes in descriptions of both pain-related and non-painrelated symptoms. Seeking a more normal lifestyle and impaired activities were themes associated with pain-related symptoms. Psychological disturbance was a theme associated with non-pain-related symptoms. The implications are for more responsive treatment of pain in SCD and greater awareness of how patients’ pain coping may be perceived as analgesic dependence. Further research could examine ways that pain-related and non-pain-related symptoms of dependence may be associated with other pain coping strategies and with the outcomes of treatment for painful episodes in hospital.
    • Understanding the causes of problematic pain management in sickle cell disease: evidence that pseudoaddiction plays a more important role than genuine analgesic dependence

      Elander, James; Lusher, Joanne; Bevan, David; Telfer, Paul; Burton, Bernice; University of Derby (2004)
      Treatment of painful episodes in sickle cell disease (SCD) is sometimes complicated by disputes between patients and staff and patient behaviors that raise concerns about analgesic misuse. Those concern-raising behaviors could indicate either drug seeking caused by analgesic dependence or pseudoaddiction caused by undertreatment of pain. To make a systematic assessment of concern-raising behaviors and examine their associations with other factors, including DSM-IV symptoms of substance dependence, individual, in-depth interviews with SCD patients were conducted to apply pre-established criteria for concernraising behaviors. These included disputes with staff, tampering with analgesic delivery systems, passing prescribed analgesics from one person to another, being suspected or accused of analgesic misuse, self-discharging from hospital, obtaining analgesic prescriptions from multiple sources, using illicit drugs, and injecting analgesics. Assessments were also made of pain-related symptoms of substance dependence (where behaviors resemble substance dependence but reflect attempts to manage pain, increasing the risk of pseudoaddiction), non-pain-related symptoms of substance dependence (where substance dependence reflects analgesic use beyond pain management), and pain coping strategies (using the Pain Coping Strategies Questionnaire). Inter-rater reliability for the assessment of concern-raising behaviors was high, with Kappa coefficients of 0.63 to 1.0. The most frequent concern-raising behaviors were disputes with staff about pain or analgesics. The least frequent were tampering with analgesic delivery systems and passing analgesics between patients in hospital. The odds of concern-raising behaviors in hospital were raised eightfold by less use of ignoring pain as a coping strategy, and more than doubled by each additional pain-related symptom of substance dependence. Non-painrelated symptoms of substance dependence had no independent effect on concern-raising behaviors. Concern-raising behaviors were more closely associated with pain behaviors that make patients vulnerable to misperceptions of substance dependence than they were with genuine substance dependence. The results show how pseudoaddiction can adversely influence hospital pain management, and suggest that more emphasis should be placed on patients’ pain and analgesic needs when responding to concern-raising behaviors in hospital.