QoL Measure for Acromegaly

1. QoL Measure for Acromegaly NZ Acromegaly meeting 2014 Tania Yarndley

2. Disclaimer The opinions expressed in this presentation represent those of the speaker The Waikato data is as yet unpublished

3. Acromegaly “Myth, legend and history are replete with accounts of giants” Edward Laws 2009 Hypersecretion of GH & IGF-1... Host of effects.. Focus on treatment

4. Treatment of Acromegaly • Surgical resection of tumour • Pharmacological therapy • Radiotherapy • Treatment of side effects

5. Progress “We have come a long way from the giants....., to a situation where a cure is possible for many patients, or failing this, good disease control; a high quality of life and normal life expectancy are possible for many others” Philip Harris 2009

6. Quality of Life Literally means “flourishing” or “happiness” Aristotle New York Heart Association (heart disease) Karnofsky Index (cancer) Proposed that physical severity of disease affects patients performance status most

7. “Well person’s” QoLdetermined more by: domestic financial social circumstances. Once person becomes ill this becomes dominant feature & impacts on life. ‘Health-related quality of life’ (HRQoL) explores psychological symptoms impact of illness distress satisfaction.

8. Quality of Life Assessment Developed by Cella • Assessment of rehabilitation needs • Endpoint to evaluate treatment outcome • Predictor of response to future treatment Potential tool for choosing treatment options, performing economic analysis & resource allocation Some evidence that QoL scores can predict survival in many cancers Cella D 1992, Quality of Life: the concept J Palliative Care 8: 8-13

9. AcroQoL Developed by Susan Webb et al in 2005 because QoL difficult to quantify, especially for Acromegaly Measures physical & psychological function (appearance/relationships)

10. Development of the Acro-QoL Questionnaire. Webb S M et al Acromegaly Quality of Life Questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: development and psychometric properties Clinical Endocrinology (2002) 57, 251–258

11. HR QoL Dimensions Initially Identified • Physical • Psychological • Social • Symptoms • Daily activities • Cognition • General health perception • Sleep • Sexual function • Pain • Energy • Body image

12. Reduced to a 22 item questionnaire • Physical (8 questions) • Psychological aspects related to appearance and personal relations (7 each) • Used: To assess self-perceived status To evaluate interventions To identify pts who require further Tx • Published AcroQolstudies of long-term effects of pit. irradiation, joint problems, SandostatinTxof Acromegaly

13. Different Focus for AcroQoL Tiemensma proposed that the psychological impact of suffering from Acromegaly ↓ QoL Explored Coping Strategies Behavioural, cognitive & emotional reaction to situations that require adjustments in dealing with an adverse event &/or its consequences e.g. Acromegaly diagnosis and treatment Illness Perceptions Belief set: may determine coping strategies & QoL . Not always reality based.

14. Initial Study 42 Cushing’s disease, 80 Acromegalics, 61 Nonfunctioning Pit. Macro, compared with 712 Dutch citizens, 59 chronic pain, 525 psychology care Coping strategies: active coping, seeking distraction, avoiding, seeking social support, passive coping, expressing emotions, positive thoughts CD/Acro/NFMA displayed different & less effective coping strategies to healthy controls Targeted intervention (coping skills, self-management) may improve QoL Tiemensma J et al Coping Strategies in Patients after Treatment for Functioning or Nonfunctioning Pituitary Adenomas JCEM April 2011 96 (4) 964-971

15. “ A better QoL score was associated with better scores on perceived personal and treatment control, and personal understanding of the disease” Tiemensma et al 2011

16. Larsson (developing Qol for NET’s) sought to identify which strategies carcinoid pts use to ‘keep a good mood’ in spite of disease & Tx - ‘getting good care’ → relationship between quality of care received and pt well-being Larsson G et al, 2001, HRQoL: anxiety & depression in pts with midgut carcinoid tumours ActaOncol240:825-831 Communication Information Support

17. Impact of acromegalyon quality of life& body image HM Conaglen, D de Jong, V Crawford, MS Elston, JV Conaglen Waikato Endocrine Unit

18. Background • Acromegaly: rare pituitary dysfunction with excessive growth hormone (GH) production • Can cause ↑ hand/foot size, facial changes, high blood pressure, diabetes, obstructive sleep apnoea, joint pain • Shown to affect physical function measures, body pain and QoLT’Sjoen et al., 2007 • Non-functioning pituitary adenoma result in cognitive defects but little QoL variation Capatina et al., 2012

19. Quality of life measurement • Most QoL measures include social, emotional & physical well-being domains • QoL affected by sleep apnoea, arthritis, diabetes & heart disease • Mood disorders associated with diabetes, heart disease • Endocrine disorders affecting GH associated with anxiety & depression • AcroQoL examines body image, energy, anxiety, depression, pain etc in acromegaly • Measure designed to assess improvement after treatment – mixed findings [Badia et al., 2004]

20. Study rationale • Effects of physical changes on QoL, mood & BI disturbance have not been well studied in acromegaly • Understanding effects will assist clinicians in providing care • Aim: Evaluate effect of physical changes on acromegaly patients & compare with non-functioning pituitary (NFP) tumour patients & control group

21. Method • Cross-sectional survey across three groups • Acromegaly • Age-matched non-functioning pituitary tumour patients • Controls who accompanied patients or were family/friends • Reasonable match for socio-economic status & ethnicity • Undertaken November 2012 to February 2013 • Acknowledge WCS summer studentship funding and DdJ • Data also retrieved from patients’ notes • Controls asked to volunteer blood sample for comparison purposes – 36% agreed

22. Measures Acromegaly patients only: • Acromegaly Quality of Life Questionnaire (AcroQoL) • 22-item questionnaire [Badia et al., 2004] • Because of my acromegaly … eg I try to avoid socializing • Range of 5 responses to each statement eg always…never • Sub-scales: global, physical, psychological, appearance, personal relationships • Detailed symptoms at diagnosis question set

23. Measures All participants: Self-esteem query Duke Health Profile[Parkerson et al., 1990] • 17-item measure of health as outcome of intervention • 6 health scales: physical, mental, social, general, & perceived health, self-esteem • 4 dysfunction scales: anxiety, depression, pain, disability • Applicable across study groups

24. Measures Body Image Disturbance Questionnaire (BIDQ) • 7 items, some in 2 parts • [a] Are you concerned about the appearance of some part(s) of your body, which you consider especially unattractive? • Not at all concerned … Extremely concerned • [b] What are these concerns? What specifically bothers you about the appearance of these body parts? • Normative data available for comparison [Cash et al., 2005] • In non-clinical sample correlated with depression, social anxiety and eating disturbance [Cash et al., 2004]

25. Measures Hospital Anxiety & Depression Scale (HADS) • 13-item questionnaire frequently used in medical research [Zigmond & Snaith, 1983] • Anxiety & depression sub-scales • Normative data for UK population for comparison [Crawford et al.,2001]

26. Demographics

27. Patients Diagnosed: 1977-2012 Diagnosed most often by Endocrine Dept Most common features leading to acromegaly diagnosis: Enlarging feet or hands, & visual loss/change Current treatments: Sandostatin &/or cabergoline Comorbidities: diabetes, hypertension, IHD, stroke/TIA, dyslipidaemia, OSA, Ca, arthritis, carpal tunnel, asthma, COPD, AF, valve disease Medications: 0-13

28. Conclusions • Waikato acromegaly patients as well, if not better than European counterparts • Obesity seems to be the factor that most influences quality of life for acromegaly patients • Also impacts NFP & control groups • Body image disturbance not as big a problem as anticipated

29. Improving Care • Hand –Held Health Care Record for Acromegaly • Auditing Healthcare • Specific Acromegaly Clinics • Support Groups • Information eg websites • Possible role for Multi-Disciplinary team approach

30. Hand Held Record “The symptoms and health effects of acromegaly can impact on your life. Changes to physical appearance, bone and joint pain, sweating, numbness in fingers, snoring and sleep apnoea may impact on quality of life. It is important that you discuss any concerns with your doctor and nurse. Some centres may routinely or periodically assess the effects of acromegaly on your quality of life (QoL) by asking you to complete a QoL survey. This may be done when you are diagnosed and subsequently to assess any changes. It may be used to assess your disease progress in addition to routine blood testing. Please discuss the use of these quality of life measures with your health team. Remember to keep your health team advised if you are having any difficulties. Referral for psychological support and counselling can be arranged. Speaking with other people with acromegaly may offer some support and this can be arranged through consumer/peer organisations such as the NZ Acromegaly Society and the Australian Pituitary Foundation.”

31. NZ Acromegaly Society Newsletter #7 Sometimes diagnosis can be a relief! “Healthy coping”- communication & discussion for effective problem solving Set realistic goals, focus on positive factors & accomplishments Focus on basics (sleep, healthy eating, exercise) Set reminders or have routines esp. medication management Marcia Sasano Health Psychologist 2012

32. Thank You