Patient-reported outcomes in cancer survivorship

Figures & data

Table 1. Select general patient-reported outcomes instruments used in cancer survivors.

	Domains	Number of items	Range and direction of scores	Validated languages
EORTC QLQ-C30 [8]	Five functional subscales: cognitive, emotional, physical, role and social functioning Three symptom subscales: fatigue, pain, nausea and vomiting Global health and quality of life subscale	30	0–100 scale: higher item and individual subscale scores correspond to better quality of life or greater level of symptoms	English, Arabic, Chinese, Danish, Dutch, French, German, Greek, Gujarati, Hindi, Indonesian, Iranian, Italian, Japanese, Norwegian, Marathi, Persian, Polish, Portuguese, Spanish, Swedish, Tarifit, Thai and Turkish
FACT-G [9]	Five subscales: emotional well-being, functional well-being, physical well-being, social well-being and relationship with doctor	34	Higher individual subscale and total scores reflect better quality of life	English, Chinese, Dutch, German, French, Italian, Japanese, Korean, Malayalam, Norwegian, Portuguese, Spanish and Swedish
SF-36 [10] Shorter versions: SF-12 [11] and SF-8 [12]	Two summary measures: physical component summary, and mental componentsummary Eight subscales: physical functioning, social functioning, role-physical, role-emotional, mental health, bodily pain, vitality, general health perceptions	36	0–100 scale: higher individual item, subscale and summary measure scores correspond to better quality of life	English, Arabic, Chinese, Dutch, French, German, Greek, Hebrew, Italian, Iranian, Japanese, Malay, Mongolian, Norwegian, Polish, Portuguese, Swedish, Thai, Tunisian and Yoruba

EORTC QLQ-C30: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire; FACT-G: Functional Assessment of Cancer Therapy General; SF-36: Medical Outcomes Study Short-Form Health Survey.

Table 2. Select patient-reported outcomes instruments for breast cancer survivors.

	Domains	Number of items	Range and direction of scores	Validated languages
EORTC QLQ-BR23 [13]	Two functional subscales: body image, sexuality Three symptom subscales: arm symptoms, breast symptoms, systemic therapy side effects Future perspective subscale	23	0–100 scale: higher item and individual subscale scores correspond to better quality of life or greater level of symptoms	English, Arabic, Chinese, Dutch, Greek, Korean, Persian, Polish, Spanish and Turkish
FACT-B [14]	Includes FACT-G (see Table 1) plus 10-item breast cancer subscale	44	Higher scores reflect better quality of life	English, Chinese, Korean, Malayalam, Spanish
FACT-ES [17]	FACT-B plus endocrine subscale	62	Higher scores reflect better quality of life	English

EORTC QLQ-BR23: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – Breast cancer 23-item subscale; FACT-B: Functional Assessment of Cancer Therapy Breast Cancer; FACT-ES: Functional Assessment of Cancer Therapy Endocrine Symptoms.

Table 3. Select patient-reported outcomes instruments for prostate cancer survivors.

	Domains	Number of items	Range and direction of scores	Validated languages
EPIC [20] Shorter versions: EPIC-26 [21] and EPIC-CP [22]	Four domains: urinary, bowel, sexual, hormonal	50	0–100 scale: higher scoresindicate better quality of life	English, Korean, Portuguese and Spanish
Prostate Cancer Symptom Indices [23]	Four domains: urinary incontinence, urinary obstruction/irritation, bowel problems, sexual dysfunction	22	0–100 scale: higher scores indicate more dysfunction (worse)	English
EORTC QLQ-PR25 [24]	Six subscales: urinary symptoms, bother due to the use of incontinence aid, bowel symptoms, sexual functioning, sexual activity, hormonal treatment-related symptoms	25	0–100 scale: higher item and individual subscale scores correspond to greater level of symptoms (urinary, bowel and hormonal treatment-related symptoms) or higher level of function (sexual)	English, Korean and Spanish
FACT-P [25]	FACT-G plus 13-item prostate cancer subscale	47	Higher scores reflect better quality of life	English, Chinese, Korean and Spanish

EPIC: Expanded Prostate Cancer Index Composite; EPIC-CP: EPIC-Clinical Practice; EORTC QLQ-PR25: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – Prostate cancer 25-item subscale; FACT-P: Functional Assessment of Cancer Therapy Prostate Cancer.

Table 4. Select patient-reported outcomes instruments for colorectal cancer survivors.

	Domains	Number of items	Range and direction of scores	Validated languages
EORTC QLQ-CR38 [28]	Four functional subscales: body image, sexual functioning, sexual enjoyment, future perspective Eight symptom subscales: micturition, gastrointestinal problems, defecation problems, stoma-related problems, chemotherapy side effects, male sexual problems, female sexual problems, and weight loss	38	0–100 scale: higher item and individual subscale scores correspond to better quality of life or greater level of symptoms	English, Chinese, Danish, Dutch, French, Japanese, Korean, Bahasa Malaysian, Polish and Spanish
FACT-C [29]	Four of five FACT-G subscales – physical, functional, social and emotional well-being – plus 10-item colorectal subscale	36	Higher scores reflect better quality of life	English, Chinese, French, Spanish

EORTC QLQ-CR38: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire – Colorectal cancer 38-item subscale; FACT-C: Functional Assessment of Cancer Therapy Colorectal Cancer.

Table 5. Additional patient-reported outcomes instruments for cancer survivors.

	Domains	Number of items	Range and direction of scores	Validated languages
CaSUN [31]	Five subscales: existential survivorship, comprehensive cancer care, information, relationships, quality of life	41	0–35 scale: higher scores indicate greater unmet needs	English
CaSPUN [32]	Five subscales: relationships, information, partner impact, comprehensive cancer care, emotional support	42	0–35 scale: higher scores indicate greater unmet needs	English
IOCv2 [35]	Two higher order scales and eightsubscales: Positive impact scale: altruism and empathy, health awareness, meaning of cancer, positive self-evaluation Negative impact scale: appearance, body changes, life interferences, worry Plus: employment, relationship (partnered), relationship (not partnered)	47	Positive impact scales: higher scores indicate greater positive impact Negative impact scales: higher scores indicate greater negative impact	English, Dutch and French
QLACS [37]	Seven generic subscales: negative feelings, positive feelings, cognitive problems, sexual problems, physical pain, fatigue and social avoidance Five cancer-specific subscales: distress-recurrence, distress-family, appearance, financial and benefits	47	Higher individual subscale scoresrepresent more problems or lower quality of life	English and Spanish
SDI-21 [40]	Three subscales: everyday living, money matters, self and others. Five single items: sexual matters, plans to have a family, where you live, holidays, other	21	Higher score indicates more difficulty	English

CaSUN: Cancer Survivors’ Unmet Needs; CaSPUN: Cancer Survivors’ Partners Unmet Needs; IOCv2: Impact of Cancer version 2; QLACS: Quality of Life in Adult Cancer Survivors; SDI-21: Social Difficulties Inventory.

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