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Conceptualizing global health-related quality of life in bladder cancer

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Abstract

Purpose

Patients’ values for health outcomes are central to treatment decisions in bladder cancer (BCa). An instrument incorporating the expressed preferences of BCa patients, as measured by utility, can inform clinical guidelines, resource allocation and policy decisions. Developing this instrument requires a formal conceptual framework summarizing the important domains comprising global health-related quality of life (HRQOL) in BCa.

Methods

We performed a systematic literature search on the HRQOL effects of BCa and its treatments to generate initial items in Medline, Embase, CINAHL and PsychInfo up to January 2013. Thematic synthesis was used to group related items into overarching themes (domains) and create a provisional conceptual framework. In focus groups, 12 BCa experts and 47 BCa patients with diverse clinical histories generated further items to inform the final conceptual framework.

Results

We retrieved 1,275 citations and reviewed 170 full-text publications. One hundred and sixty-nine items were extracted into 12 domains. Study investigators used the findings from the focus groups to confirm the domains and condense the list to 83 clinically important items. Functional limitations in work, travel, social interaction and sleep lowered HRQOL in many domains. The final conceptual framework included BCa-specific (urinary, sexual, bowel, body image) and generic domains (pain, vigor, social, psychological, sleep, functional, family relationship, medical care relationship).

Conclusions

A conceptual framework including 12 domains can serve as the foundation for the development of an instruments measuring global HRQOL in BCa and in particular, one that can measure patient preferences and generate utilities.

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Acknowledgments

This work is supported by an operating Grant from The Canadian Institutes of Health Research. The authors would like to thanks Kirstin Boehme for her assistance reviewing the manuscript.

Author information

Authors and Affiliations

  1. Division of Urology, Department of Surgical Oncology, Princess Margaret Hospital, University Health Network, University of Toronto, 610 University Avenue, 3-130, Toronto, ON, M5G 2M9, Canada

    Nathan Perlis, Antonio Finelli & Girish Kulkarni

  2. Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada

    Nathan Perlis, Murray Krahn & Shabbir Alibhai

  3. Department of Medicine, University Health Network, University of Toronto, Toronto, ON, Canada

    Murray Krahn & Shabbir Alibhai

  4. Toronto General Research Institute, University Health Network, Toronto, ON, Canada

    Murray Krahn, Shabbir Alibhai & Karen E. Bremner

  5. Institute of Medical Science, University of Toronto, Toronto, ON, Canada

    Shabbir Alibhai & Antonio Finelli

  6. School of Kinesiology and Health Science and the Department of Psychology, York University, Toronto, ON, Canada

    Paul Ritvo

  7. Population Studies and Surveillance, Cancer Care Ontario, Toronto, ON, Canada

    Paul Ritvo

  8. Institute for Clinical Evaluative Sciences, University of Toronto, Toronto, ON, Canada

    Girish Kulkarni

Authors
  1. Nathan Perlis
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  2. Murray Krahn
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  3. Shabbir Alibhai
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  4. Antonio Finelli
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  5. Paul Ritvo
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  7. Girish Kulkarni
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Corresponding author

Correspondence to Nathan Perlis.

Appendices

Appendix 1: Search strategies for conceptual framework and item generation

figure a
figure b

Appendix 2: Script for expert focus group—item generation

Group leader (NP): Thank you for agreeing to participate in this genitourinary, BCa expert panel today. Let me introduce the members of the group. Dr. XX, specialty YY, from University VV. My name is Nathan Perlis. I am a urology resident at University of Toronto and a Masters student at the Institute of Health Policy, Management and Evaluation. I am one of the co-investigators in this study. This is ZZ he/she is the research assistant working on our project.

The objective of our study is to design a measurement instrument that can accurately measure quality of life for patients with BCa, particularly focusing on how quality of life issues affect BCa patients when making decisions about their care. This instrument is intended for use on all patients with BCa regardless of disease severity, age, or treatment history.

You have all been invited to this focus group because of your extensive experience working with patients with BCa. Likely, you have all helped council patient through difficult decisions regarding care where quality of life was an important consideration. At this stage of questionnaire design we are trying to consider as many items as possible that may be important to BCa patients and their quality of life. By the end of today’s session we hope to have a long-list of items that can later be pared down to the most important to be included in our instrument.

Your participation in this focus group is entirely voluntary. If at any time you would like to withdraw you can stop participating. I will be transcribing the items that you suggest during this session on a board for everyone to see and the RA will be taking notes. Each of your identities will be anonymous and the items generated will not be linked with particular specialists. I am also audio recording the meeting. I will use the audiotape only to clarify my notes, and once I am satisfied with the transcription the tapes will be deleted.

Are there any questions so far?

Would anyone no longer like to participate?

Let us start with a general question: How do you think quality of life is diminished for patients with BCa?

Items will be written on chalkboard. We will be as inclusive as possible—items will be considered unique as long as any specialist considers them separate (i.e., Loss of sensation and numbness).

When no new items are being suggested we will prompt the group further by presenting a list of items that we generated prior by literature search:

Here is a list of items that we generated from the literature that have been used in previous quality of life instruments for patients with BCa. Does this list prompt any new items that you can offer?

Once no new items are generated we will conclude:

Thank you again for your attendance. We will inform you soon regarding possible dates for the next expert meeting where we will review the preliminary instrument.

Appendix 3: Patient focus group and phone interview script

Hello everyone, thank you very much for attending this focus group today. My name is Nathan Perlis. I am a doctor currently training in urology and attaining a master’s degree in clinical epidemiology at University of Toronto. This is XXX the research assistant on this project. First, I would like to thank you for agreeing to participate in this study. If any of you have any questions about the study or need any clarification please ask at any point. If at any time you feel that you would no longer like to participate in the study that is fine. Participation is completely voluntary. We thank you for taking time to attend this session.

As you have already read in the consent form, this study concerns quality of life in BCa. You are being asked to take part in this research study because you have BCa and have experienced its affects on quality of life. The aim of this study is to develop a new questionnaire to measure quality of life in all BCa patients.

This study will not benefit you specifically but it should advance knowledge about issues related to the treatment of BCa. There are no expected risks of participation in this study, other than feelings of stress or embarrassment. You may refuse to answer any questions should you so choose.

The objective of our study is to design a measurement instrument that can accurately measure quality of life for patients with BCa, particularly focusing on how quality of life issues affect BCa patients when making decisions about their care. This instrument is intended for use on all patients with BCa regardless of disease severity, age, or treatment history.

At this early stage of questionnaire development we are trying to consider as many items as possible that may be important to you and your quality of life. By the end of today’s session we hope to have a long-list of items that can later be pared down to the most important items to be included in the instrument.

Everything that you say today will be kept in strict confidence. We will be taking notes, but your names will not be linked to any comments. We will also be audio recording and transcribing the interview but names of participants will not be transcribed and the audiotapes will be destroyed once they are transcribed. We ask that any comments that other participants make today be treated with strict confidence.

Are there any questions?

Can I clarify anything so far?

Is there anyone that would no longer like to participate?

We will start the question and answer period now.

What are the most significant ways in which BCa affects your quality of life?

Try and consider times during your illness where you were faced with a difficult decision about therapy for BCa. Were there quality of life issues that you were concerned about? How did those affect your decision making?

Thank you for those detailed responses. We would like you now to consider some specific areas that may or may not have been covered already.

How does BCa affect your physical health?

How does BCa affect your self-care?

How does BCa affect your work?

How does BCa affect your household activities?

How does BCa affect your social activities?

How does BCa affect your hobbies?

How does BCa affect your relationships?

How does BCa affect your ability to be sexually intimate?

Thank you again for participating in this session. We will be contacting you all to arrange follow-up interviews.

Appendix 4: Unabridged item list from literature search

  1. 1.

    Frequency

  2. 2.

    Dysuria

  3. 3.

    Painful urination

  4. 4.

    Urgency

  5. 5.

    Nocturia

  6. 6.

    Sleep disturbance

  7. 7.

    Bone pain from metastatic disease

  8. 8.

    Pelvic pain from metastatic disease

  9. 9.

    Incontinence

  10. 10.

    Pain (general)/aches pains

  11. 11.

    Hematuria

  12. 12.

    Incomplete emptying

  13. 13.

    Decreased urinary stream

  14. 14.

    Nausea

  15. 15.

    Fatigue

  16. 16.

    Dyspnea

  17. 17.

    Insomnia

  18. 18.

    Infection

  19. 19.

    Lymphoedema

  20. 20.

    Urinary control

  21. 21.

    Nausea and vomiting from chemotherapy

  22. 22.

    Anorexia from chemo

  23. 23.

    Weight loss fro chemo

  24. 24.

    Fatigue and malaise from chemo

  25. 25.

    Alopecia from chemo

  26. 26.

    Diarrhea from chemo

  27. 27.

    Mouth soreness from chemo

  28. 28.

    Sleep disturbance from chemo

  29. 29.

    Serious chemo toxicity—septicemia/organ failure

  30. 30.

    Hematologic—anemia, thrombocytopenia, leukopenia, neutropenia

  31. 31.

    Infertility from chemo

  32. 32.

    GI symptoms/rectal/diarrhea/blood

  33. 33.

    Abdominal bloating

  34. 34.

    Difficulty or apprehension about catheterizing a pouch/stoma/neobladder

  35. 35.

    Continent reservoir advantage intact skin, no stoma, no appliance

  36. 36.

    Pain/soreness at stoma

  37. 37.

    Ileal conduit—leakage/neobladder nocturnal leak

  38. 38.

    Chronic urinary infections

  39. 39.

    Contracted bladder

  40. 40.

    Renal failure and electrolyte disturbances

  41. 41.

    Skin excoriation

  42. 42.

    Sexual impotence

  43. 43.

    Foul odor from stoma/urine/gas

  44. 44.

    Incontinence with neobladder/leakage stoma

  45. 45.

    Metabolic abnormality—b12 deficiency, osteoporosis, acidosis

  46. 46.

    Food intolerance

  47. 47.

    Appetite loss

  48. 48.

    Frequent stoma emptying

  49. 49.

    Urinary bother

  50. 50.

    Feel urostomy is foreign

  51. 51.

    Fatigue and malaise

  52. 52.

    Radiation cystitis

  53. 53.

    Radiation proctitis

  54. 54.

    Radiation enteritis

  55. 55.

    Diarrhea

  56. 56.

    GI fistula

  57. 57.

    Contracted bladder

  58. 58.

    Infertility—increased FSH

  59. 59.

    Hematuria

  60. 60.

    Body awareness

  61. 61.

    Urinary frequency

  62. 62.

    Dysuria

  63. 63.

    Hematuria

  64. 64.

    Mucus secretion

  65. 65.

    Nausea

  66. 66.

    Fatigue

  67. 67.

    Chills

  68. 68.

    Joint pain

  69. 69.

    Fever

  70. 70.

    Pain secondary to IV therapy

  71. 71.

    Time required to get the iv course complete

  72. 72.

    Able to have sex

  73. 73.

    Impotence/ED

  74. 74.

    Fear of intimacy

  75. 75.

    Decreased libido

  76. 76.

    Decreased sexual pleasure

  77. 77.

    Psychogenic ED

  78. 78.

    Painful intercourse

  79. 79.

    Genital pain in women with intercourse

  80. 80.

    Satisfied by sexual life

  81. 81.

    Level of “sexuality”

  82. 82.

    Intercourse frequency

  83. 83.

    Disrupted vaginal anatomy

  84. 84.

    Altered sensation

  85. 85.

    Importance of getting back to “normal” or baseline lifestyle

  86. 86.

    Demand of treatment regimes limit ability to maintain social contacts

  87. 87.

    Fear of leaking limits social interaction

  88. 88.

    Fear of being burden to others

  89. 89.

    Embarrassment of symptoms

  90. 90.

    Hesitancy in asking for support

  91. 91.

    Family withdrawal of contact

  92. 92.

    Hobbies and interests maintained or restricted

  93. 93.

    Position in family

  94. 94.

    Generally altered marital/partner relationship/family

  95. 95.

    Generally altered relationships with friends

  96. 96.

    Embarrassed public bathing, swimming, etc., from stoma

  97. 97.

    Comfortable discussing condition with friends

  98. 98.

    Afraid to be far from toilet

  99. 99.

    Reduction in free time

  100. 100.

    Holidays/traveling

  101. 101.

    Difficulty meeting new people

  102. 102.

    Self-care activities

  103. 103.

    Mobility

  104. 104.

    Physical activity

  105. 105.

    Role activity

  106. 106.

    Unfit to work

  107. 107.

    Physically unwell

  108. 108.

    Tired

  109. 109.

    Generally ill

  110. 110.

    Vitality/energetic

  111. 111.

    Maintaining independence

  112. 112.

    Forced to spend time in bed

  113. 113.

    Exercise

  114. 114.

    Depression

  115. 115.

    Anxiety

  116. 116.

    Physical and emotional burden of repeat procedure

  117. 117.

    Fear of death

  118. 118.

    Loss of love

  119. 119.

    Support from spouse

  120. 120.

    Loss of security

  121. 121.

    Generally altered mental status

  122. 122.

    Irritability

  123. 123.

    Despair with urinary leakage

  124. 124.

    Loneliness

  125. 125.

    Worry treatment won’t work

  126. 126.

    Worry treatment will limit ability to work

  127. 127.

    Trauma from genital surgery

  128. 128.

    Loss of self-esteem

  129. 129.

    Coping

  130. 130.

    Tense

  131. 131.

    Accepting diagnosis

  132. 132.

    Restless

  133. 133.

    Find life meaningless

  134. 134.

    Changed outlook on life

  135. 135.

    Distress of false positive results

  136. 136.

    Distress due to waiting time for results of tests

  137. 137.

    Feel safe or not

  138. 138.

    Altered relationship to pain

  139. 139.

    General psych distress

  140. 140.

    Somatization

  141. 141.

    Uncertainty

  142. 142.

    Loss of body image

  143. 143.

    Ability to conceal stoma

  144. 144.

    Catheterizing in public

  145. 145.

    Feel undesirable when family or friends see stoma

  146. 146.

    Accepting the stoma

  147. 147.

    Contempt

  148. 148.

    Happiness

  149. 149.

    Spiritual life/religion

  150. 150.

    Sense of inner peace

  151. 151.

    Reason to be alive

  152. 152.

    Coping strategies

  153. 153.

    Interpersonal manner of healthcare providers

  154. 154.

    Technical quality of healthcare delivery

  155. 155.

    Efficacy of medical care

  156. 156.

    Availability of stoma nurse

  157. 157.

    Knowledge of ward nurse about stoma needs

  158. 158.

    Sufficient and quality of info about disease and treatment and satisfaction

  159. 159.

    Nursing efforts to develop self-care

  160. 160.

    Feeling like nothing can be done to relive symptoms

  161. 161.

    Embarrassed to “make a fuss” or tell MD about symptoms so as not to jeopardize Rx

  162. 162.

    Knowing who to contact and what to do when side-effects occur

  163. 163.

    Talking with patient that has undergone same treatment

  164. 164.

    Anxiety about not knowing ahead of time which urinary reconstruction will be performed

  165. 165.

    Satisfied with type of diversion received

  166. 166.

    Contact with hospital

  167. 167.

    Decrease “in patient” hospital stay without surgery

  168. 168.

    Provision of nurse-led follow-up care increases pt satisfaction

  169. 169.

    Physician effort in including patient in decision making

Appendix 5: Twenty most frequent items relating HRQOL and BCa in the literature

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Perlis, N., Krahn, M., Alibhai, S. et al. Conceptualizing global health-related quality of life in bladder cancer. Qual Life Res 23, 2153–2167 (2014). https://doi.org/10.1007/s11136-014-0685-9

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