Impact of Short Bowel Syndrome on Quality of Life and Family: The Patient's Perspective

Abstract

Background Short bowel syndrome (SBS) has an impact on children and their families not only physically, but also emotionally, mentally, and socially. This study aimed to evaluate quality of life and family impact in patients with SBS, using the Pediatric Quality of Life Inventory (PedsQL) measurement model.

Materials and Methods PedsQL questionnaires were administered to patients with SBS followed at the Pediatric Surgery of Royal Manchester Children's Hospital. The scores were compared between two groups differing in age (children <5 y vs. >5 y) and with known-groups from literature published by Varni et al.

Results Forty-three patients were sent the questionnaires, and 30 (70%, 17 < 5 and 13 > 5) responded. Family Impact Module failed to distinguish between families of children younger and older than 5 years of age. In contrast, it distinguished between families with SBS children and the ones with children in a long-term care facility. Healthcare satisfaction was worse in families of children over 5 years regarding information received, inclusion of the family, and communication. When compared with normal population, SBS children scored worse on Generic Core Scales for all domains except for emotional functioning.

Conclusion Although advances have been made on the treatment of children with SBS, and improvements have been reached on home PN, this condition is still significantly affecting the quality of life of children and their families. The future quality control of medical care must have greater focus on psychosocial and emotional functioning, aiming for the best possible quality of life.

Keywords

short bowel syndrome - health-related quality of life - Pediatric Quality of Life Inventory

• References

• 1 Nightingale J, Woodward JM. ; Small Bowel and Nutrition Committee of the British Society of Gastroenterology. Guidelines for management of patients with a short bowel. Gut 2006; 55 (Suppl. 04) iv1-iv12
• 2 Huisman-de Waal G, Schoonhoven L, Jansen J, Wanten G, van Achterberg T. The impact of home parenteral nutrition on daily life-a review. Clin Nutr 2007; 26 (03) 275-288
• 3 Jeppesen PB, Langholz E, Mortensen PB. Quality of life in patients receiving home parenteral nutrition. Gut 1999; 44 (06) 844-852
• 4 Wanten GJ. Parenteral approaches in malabsorption: home parenteral nutrition. Best Pract Res Clin Gastroenterol 2016; 30 (02) 309-318
• 5 Khalil BA, Ba'ath ME, Aziz A. , et al. Intestinal rehabilitation and bowel reconstructive surgery: improved outcomes in children with short bowel syndrome. J Pediatr Gastroenterol Nutr 2012; 54 (04) 505-509
• 6 Carlson GL, Maguire G, Williams N, Bradley A, Shaffer JL, Irving MH. Quality of life on home parenteral nutrition: a single centre study of 37 patients. Clin Nutr 1995; 14 (04) 219-228
• 7 Persoon A, Huisman-de Waal G, Naber TA. , et al. Impact of long-term HPN on daily life in adults. Clin Nutr 2005; 24 (02) 304-313
• 8 Smith CE. Quality of life in long-term total parenteral nutrition patients and their family caregivers. J Parenter Enteral Nutr 1993; 17 (06) 501-506
• 9 Emedo MJ, Godfrey EI, Hill SM. A qualitative study of the quality of life of children receiving intravenous nutrition at home. J Pediatr Gastroenterol Nutr 2010; 50 (04) 431-440
• 10 Wong C, Akobeng AK, Miller V, Thomas AG. Quality of life of parents of children on home parenteral nutrition. Gut 2000; 46 (02) 294-295
• 11 Edge H, Hurrell R, Bianchi A. , et al. Caregiver evaluation and satisfaction with autologous bowel reconstruction in children with short bowel syndrome. J Pediatr Gastroenterol Nutr 2012; 54 (04) 510-515
• 12 O'Neill JK, O'Neill PJ, Goth-Owens T, Horn B, Cobb LM. Care-giver evaluation of anti-gastroesophageal reflux procedures in neurologically impaired children: what is the real-life outcome?. J Pediatr Surg 1996; 31 (03) 375-380
• 13 Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The PedsQL Family Impact Module: preliminary reliability and validity. Health Qual Life Outcomes 2004; 2: 55
• 14 Souza FM, Molina J, Terreri MT, Hilário MO, Len CA. Reliability of the Pediatric Quality of Life Inventory – Healthcare Satisfaction Generic Module 3.0 version for the assessment of the quality of care of children with chronic diseases. J Pediatr (Rio J) 2012; 88 (01) 54-60
• 15 Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003; 3 (06) 329-341
• 16 Ba'ath ME, Almond S, King B, Bianchi A, Khalil BA, Morabito A. Short bowel syndrome: a practical pathway leading to successful enteral autonomy. World J Surg 2012; 36 (05) 1044-1048
• 17 Gottrand F, Staszewski P, Colomb V. , et al. Satisfaction in different life domains in children receiving home parenteral nutrition and their families. J Pediatr 2005; 146 (06) 793-797
• 18 Carlsson E, Bosaeus I, Nordgren S. Quality of life and concerns in patients with short bowel syndrome. Clin Nutr 2003; 22 (05) 445-452
• 19 Engström I, Björnestam B, Finkel Y. Psychological distress associated with home parenteral nutrition in Swedish children, adolescents, and their parents: preliminary results. J Pediatr Gastroenterol Nutr 2003; 37 (03) 246-250