In 1989, a group of doctors, together with sociologist Guyatt G at Hamilton University, Canada, developed and validated the disease-specific Inflammatory Bowel Disease Questionnaire (IBDQ ) [36, 37]. To date the questionnaire has been translated into 37 languages by forward and backward translation and can be purchased from Hamilton University (www.​mcmaster.​flintbox.​com).

The questionnaire comprises 32 items which measure the following broad domains: physical health, psychological health, social relationships, and environment. Responses are scored on a 7-point Likert scale, in which 7 corresponds to the highest level of functioning. Cumulative scoring above 170 points represents a good quality of life, with a possible range of 32–224. When compared with the general population, IBD patients have impaired quality of life in all four categories. The most frequent concerns of UC patients are having an ostomy bag, developing cancer, side effects, the uncertain nature of their disease, and the need for surgery. The most frequent concerns of CD patients are the uncertain nature of their disease, impaired energy level, side effects of medication, the need for surgery, and having an ostomy bag [35]. Surgical quality of life with inflammatory bowel disease has not been well examined and the IBDQ is not applicable to patients with stoma.

The short Inflammatory Bowel Disease Questionnaire (s-IBDQ) is a shorter version of the original instrument. It consists of ten items from the IBDQ covering all four dimensions where scoring above 50 points (range 10–70) indicates good quality of life [8] and may be more convenient for use in the office, for use in large research studies, or in clinical trials [38]. The s-IBDQ has recently been used for web-based treatment applications, where patients score their HRQoL at home using a validated eHealth tool [39–41].

In 1992 a questionnaire to determine the subjective health status of patients with inflammatory bowel disease was developed and verified. To examine the quality of life in a group of “healthy” outpatients with IBD, the group from Edmonton, Canada developed a self-administered form of this questionnaire comprising 36 questions across five dimensions: systemic symptoms, bowel symptoms, functional impairment, social impairment, and emotional function. Scores ranging between 36 and 252 points are possible, with scores above 180 indicative of a good quality of life [42].

The Short Health Scale (SHS) was developed in Sweden, initially designed as part of a network strategy to describe various aspects of the concept of health [43]. It is a self-administered questionnaire comprised of four items, each addressing a subjective health dimension: symptoms, functional status, worry, and general well-being (Tables 25.1 and 25.2). Responses are graded on a 100-mm visual analogue scale. The results, presented as an individual score for each of the four items, form a profile. The questions are open-ended so that patients can take into account any or all aspects of their life that they feel are important when completing the questionnaire [44]. The SHS correlates with the IBDQ and has been validated in adult Swedish and Norwegian IBD patients [44–46], and has been evaluated in adult IBD patients in the UK [47] as well as Croatian pediatric-onset patients [48].

The Rating Form of IBD Patient Concern (RFIPC) , a 25-item disease-specific questionnaire, rates worries and concerns of patients with IBD on a 100-mm VAS scale (range, 0–100 mm) [49]. Zero mm represents “not at all” and 100 “a great deal.” The sum score is the mean average of the scores across all 25 items. The RFIPC has been found to be reliable and valid [50–53]; while it is not applicable to patients with stoma, it has been validated in patients with pouch after proctocolectomy [54].

The most regularly used disease-specific HRQoL for P-IBD is IMPACT [55], which is also recommended by the pediatric committee of the European Crohn’s and Colitis Organization (P-ECCO) as a secondary outcome measure in clinical trials [56]. The IMPACT questionnaire originates in Canada and was developed after item-generated and item-reduction interviews with 82 P-IBD patients (8–17 years) [22]. To mirror the adult IBDQ, it was decided beforehand to arrive at a 33-item questionnaire in the item-reduction phase. Responses to each question are recorded on a 10 cm VAS (with increments of 0.7 cm, for comparison to the IBDQ score). The 33 items are divided according to six dimensions: bowel symptoms; body image; emotional functioning; social functioning; tests/treatments; and systemic symptoms. A higher score represents a better quality of life (with a range of 0–231).

IMPACT has been validated and found reliable in Canada [57]. It was further tested in Europe, among British and Dutch children, where it was found that some of the questions were inappropriate and/or too difficult to understand. Subsequently a simpler wording of the questionnaire was introduced and some of the questions were replaced, resulting in IMPACT II (35 items, VAS score, same six dimensions, score range of 0–245) [58]. IMPACT III consists of the same questions as IMPACT II, but with a 5-point Likert scale (score range of 35–175) instead of VAS [59]. IMPACT III has been validated and evaluated in children [58, 60] as well as in a parent-proxy setting, showing overall good concordance—except with regard to emotional functioning, where parents scored emotional functioning lower than did their children [61]. IMPACT III has been translated through cross-cultural adaptation into 40 languages [56].

The SF-36 is a generic questionnaire containing 36 items [62]. Thirty-five of the items are grouped into eight multi-item scales. The eight domains of the SF-36 are as follows: physical function (ten items); social function (two items); role limitations due to physical problems (four items); role limitations due to emotional problems (three items); energy/vitality (four items); mental health (five items); bodily pain (two items); and general health perception (five items). In addition, it contains a one-item measure of self-evaluated change in health status (health transition) over the previous year. For each question, a raw score is coded and transformed into a percentage, with 0 indicating the least favorable possible health status and 100 indicating the most favorable.

The 12-item Short Form Health Survey (SF-12) was developed for the Medical Outcomes Study (MOS), a multi-year study of patients with chronic conditions [63]. The resulting short-form survey instrument provides a solution to the problem faced by many investigators who must restrict survey length. It consists of 12 questions grouped into a physical and a mental component summary score (PCS and MCS) and eight multi-item scales. The instrument was designed to reduce respondent burden while achieving minimum standards of precision for purposes of group comparisons involving multiple health dimensions.

The Psychological General Well-Being Index (PGWBI) is a generic 22-item questionnaire measuring subjective feelings of well-being and distress [64]. Responses are graded on a 6-point Likert scale. Lower values correspond to more negative responses and higher values to more positive responses. The overall score is the summation of the item responses, ranging from 22–132. The questionnaire has been used alone and in combination with other generic and disease-specific questionnaires, both in general populations and in studies of chronic illness. The PGWBI has been translated and culturally adapted into at least 36 languages.

PedsQL [65] is a regularly used generic HRQoL for assessing those with P-IBD [10, 48, 66–72]. It is valid and reliable [73–75] and exists in several languages [19]. The updated version, PedsQL 4.0 Generic Core Scales [73], consists of 23 items covering the following dimensions: (1) physical functioning, (2) emotional functioning, (3) social functioning, and (4) school functioning. The questionnaire consists of parallel versions, with child self-reported (ages 5–7, 8–12, and 13–18) and parent-proxy-reported (age 2–18) scores. The child self-reported and parent-reported versions are essentially identical but differ in the wording of the questions (i.e., first or third person, respectively). Furthermore, the school-related items differ depending on the age of the child. Answers are given on a 5-point (0–4) scale or a 3-point (0, 2, and 4) scale, expressed as corresponding faces to ease the process for the youngest patients (age 5–7). Items are reverse-scored and linearly transformed to a 0–100 scale divided by the number of items answered. Higher scores represent a better HRQoL. The score can be evaluated as a total HRQoL score and two summary scores: physical health (dimension 1) and psychosocial health (dimensions 2–4). A PedsQL family information form is used to collect demographic data and information about missing days of school and work (for the parents) caused by the child’s ill health.

Another generic HRQoL measure is the Netherlands Organization for Applied Scientific Research Academic Medical Centers (TNO AZL) Child Quality Of Life (TACQOL) and Preschool Children Quality of Life (TAPQOL) [76, 77]. TACQOL and TAPQOL have been used in Dutch P-IBD publications [14, 58, 78]; while other pediatric generic HRQoL questionnaires used in pediatric populations exist [19, 20], they appear less regularly in P-IBD publications.