Impact of a Telenursing service on satisfaction and health outcomes of children with inflammatory rheumatic diseases and their families: a crossover randomized trial study protocol

BMC Pediatrics

Michaël Hofer²  Christophe Gueniat¹  Joachim Rapin²  Béatrice Fonjallaz³  Anne-Sylvie Ramelet¹ 

[1]Haute Ecole de Santé Vaud (HESAV), University of Applied Sciences and Arts Western Switzerland, Rte de la Corniche 10, Lausanne 1011, Switzerland

[2]Département Médico-Chirurgical de Pédiatrie (DMCP), CHUV, Rue du Bugnon 21, Lausanne 1011, Switzerland

[3]Geneva League for Rheumatology, La ligue Genevoise contre le Rhumatisme, Rue Merle d’Aubigné 22, Geneva 1207, Switzerland

关键词: Rheumatic diseases;    Health outcomes;    Child;    Nursing;    Hotlines;    Telenursing;   

Others  :  1138771
DOI  :  10.1186/1471-2431-14-151

 received in 2014-05-01, accepted in 2014-06-10,  发布年份 2014

【 摘 要 】

Background

Pediatric rheumatic diseases have a significant impact on children’s quality of life and family functioning. Disease control and management of the symptoms are important to minimize disability and pain. Specialist clinical nurses play a key role in supporting medical teams, recognizing poor disease control and the need for treatment changes, providing a resource to patients on treatment options and access to additional support and advice, and identifying best practices to achieve optimal outcomes for patients and their families. This highlights the importance of investigating follow-up telenursing (TN) consultations with experienced, specialist clinical nurses in rheumatology to provide this support to children and their families.

Methods/Design

This randomized crossover, experimental longitudinal study will compare the effects of standard care against a novel telenursing consultation on children’s and family outcomes. It will examine children below 16 years old, recently diagnosed with inflammatory rheumatic diseases, who attend the pediatric rheumatology outpatient clinic of a tertiary referral hospital in western Switzerland, and one of their parents. The telenursing consultation, at least once a month, by a qualified, experienced, specialist nurse in pediatric rheumatology will consist of providing affective support, health information, and aid to decision-making. Cox’s Interaction Model of Client Health Behavior serves as the theoretical framework for this study. The primary outcome measure is satisfaction and this will be assessed using mixed methods (quantitative and qualitative data). Secondary outcome measures include disease activity, quality of life, adherence to treatment, use of the telenursing service, and cost. We plan to enroll 56 children.

Discussion

The telenursing consultation is designed to support parents and children/adolescents during the course of the disease with regular follow-up. This project is novel because it is based on a theoretical standardized intervention, yet it allows for individualized care. We expect this trial to confirm the importance of support by a clinical specialist nurse in improving outcomes for children and adolescents with inflammatory rheumatisms.

Trial registration

ClinicalTrial.gov identifier: NCT01511341 (December 1^st, 2012).

【 授权许可】

   
2014 Ramelet et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

【 参考文献 】

• [1]Jeanneret C, Saurenmann R, Cannizzaro E, Sauvain M, Bolt I, Bolz D, Kaiser D, Berthet G, Huemer C, Schlam S, Rüdt R, Hofer M: Pediatric Rheumatology in Switzerland: data from the Swiss Pediatric Rheumatology registry. Ann Rheum Dis 2009, 68(suppl3):306.
• [2]Borchers AT, Selmi C, Cheema G, Keen CL, Shoenfeld Y, Gershwin ME: Juvenile idiopathic arthritis. Autoimmun Rev 2006, 5(4):279-298.
• [3]Oen K: Comparative epidemiology of the rheumatic diseases in children. Curr Opin Rheumatol 2000, 12(5):410-414.
• [4]Quartier P, Prieur A-M: Juvenile idiopathic arthritis. (I). Clinical aspects. Rev Prat 2007, 57(11):1171-1178.
• [5]Barr T, Carmichael NM, Sandor GKB: Juvenile idiopathic arthritis: a chronic pediatric musculoskeletal condition with significant orofacial manifestations. J Can Dent Assoc 2008, 74(9):813-821.
• [6]Hofer MF, Mouy R, Prieur AM: Juvenile idiopathic arthritis evaluated prospectively in a single center according to the Durban criteria. J Rheumatol 2001, 28(5):1083-1090.
• [7]Benestad B, Vinje O, Veierod MB, Vandvik IH: Quantitative and qualitative assessments of pain in children with juvenile chronic arthritis based on the Norwegian version of the pediatric pain questionnaire. Scand J Rheumatol 1996, 25(5):293-299.
• [8]Eccleston C, Bruce E, Carter B: Chronic pain in children and adolescents. Paediatr Nurs 2006, 18(10):30-33. Epub 2006/12/30
• [9]Brunner HI, Klein-Gitelman MS, Miller MJ, Trombley M, Baldwin N, Kress A, Johnson AL, Barron AC, Griffin TA, Passo MH, Lovell DJ: Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis Rheum 2004, 51(5):763-773.
• [10]Birks Y: Adolescents learned self-management of arthritis by acquiring knowledge and skills and experiencing understanding from social support. Evid Based Nurs 2008, 11(3):92.
• [11]Seid M, Opipari L, Huang B, Brunner HI, Lovell DJ: Disease control and health-related quality of life in juvenile idiopathic arthritis. Arthritis Rheum 2009, 61(3):393-399.
• [12]Kimura Y, Walco GA: Pain in children with rheumatic diseases. Curr Rheumatol Rep 2006, 8(6):480-488.
• [13]LeBovidge JS, Lavigne JV, Donenberg GR, Miller ML: Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review. J Pediatr Psychol 2003, 28(1):29-39.
• [14]Gutiérrez-Suárez R, Pistorio A, Cespedes Cruz A, Norambuena X, Flato B, Rumba I, Rumba I, Harjacek M, Nielsen S, Susic G, Mihaylova D, Huemer C, Melo-Gomes J, Andersson-Gare B, Balogh Z, De Cunto C, Vesely R, Pagava K, Romicka AM, Burgos-Vargas R, Martini A, Ruperto N, Pediatric Rheumatology International Trials Organisation: Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. Rheumatology (Oxford) 2007, 46(2):314-320.
• [15]Oliveira S, Ravelli A, Pistorio A, Castell E, Malattia C, Prieur AM, Saad-Magalhães C, Murray KJ, Bae SC, Joos R, Foeldvari I, Duarte-Salazar C, Wulffraat N, Lahdenne P, Dolezalova P, de Inocencio J, Kanakoudi-Tsakalidou F, Hofer M, Nikishina I, Ozdogan H, Hashkes PJ, Landgraf JM, Martini A, Ruperto N, Pediatric Rheumatology International Trials Organization: Proxy-reported health-related quality of life of patients with juvenile idiopathic arthritis: the pediatric rheumatology international trials organization multinational quality of life cohort study. Arthritis Rheum 2007, 57(1):35-43.
• [16]Andrews NR, Chaney JM, Mullins LL, Wagner JL, Hommel KA, Jarvis JN: The differential effect of child age on the illness intrusiveness-parent distress relationship in juvenile rheumatic disease. Rehabil Psychol 2009, 54(1):45-50.
• [17]Hopia H, Paavilainen E, Åstedt-Kurki P: The diversity of family health: constituent systems and resources. Scand J Caring Sci 2005, 19(3):186-195.
• [18]Wagner JL, Chaney JM, Hommel KA, Page MC, Mullins LL, White MM, Jarvis JN: The influence of parental distress on child depressive symptoms in juvenile rheumatic diseases: the moderating effect of illness intrusiveness. J Pediatr Psychol 2003, 28(7):453-462.
• [19]Job-Deslandre C: Pronostic à long terme des arthrites juvéniles idiopathiques. Rev Rhum Ed Fr 2003, 70(6):488-492.
• [20]Ravelli A, Martini A: The long-term outcome of juvenile idiopathic arthritis. Curr Rheumatol Rep 2005, 1:151-155.
• [21]Oen K: Long-term outcomes and predictors of outcomes for patients with juvenile idiopathic arthritis. Best Pract Res Clin Rheumatol 2002, 16(3):347-360.
• [22]Packham JC, Hall MA: Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome. Rheumatology (Oxford) 2002, 41(12):1428-1435.
• [23]Peterson LS, Mason T, Nelson AM, O’Fallon WM, Gabriel SE: Psychosocial outcomes and health status of adults who have had juvenile rheumatoid arthritis: a controlled, population-based study. Arthritis Rheum 1997, 40(12):2235-2240.
• [24]Cornell P: Management of patients with rheumatoid arthritis. Nurs Stand 2007, 22(4):51-57.
• [25]Oliver S: Best practice in the treatment of patients with rheumatoid arthritis. Nurs Stand 2007, 21(42):47-56. quiz 8; Epub 2007/08/08
• [26]Quartier P, Prieur A-M: Juvenile idiopathic arthritis. (II). Treatment and prognosis. Rev Prat 2007, 57(12):1289-1293.
• [27]Hashkes PJ, Laxer RM: Medical treatment of juvenile idiopathic arthritis. JAMA 2005, 294(13):1671-1684.
• [28]Weiss J, Ilowite NT: Juvenile idiopathic arthritis. Pediatr Clin North Am 2005, 52:413-442.
• [29]Thon A, Ullrich G: Information needs in parents of children with a rheumatic disease. Child Care Health Dev 2009, 35(1):41-47.
• [30]Ruperto N, Martini A: Network in pediatric rheumatology: the example of the pediatric rheumatology international trials organization. World J Pediatr 2008, 4(3):186-191.
• [31]Hofer M, Ruperto N: Outils d’évaluation fonctionnelle et de qualité de vie. In Les maladies inflammatoires et systémiques de l’enfant. Edited by Prieur AM, Quarier P, Glorion C. Paris: Flammarion; 2009:p. 26-p. 31.
• [32]Adib N, Hyrich K, Thornton J, Lunt M, Davidson J, Gardner-Medwin J, Foster H, Baildam E, Wedderburn L, Thomson W: Association between duration of symptoms and severity of disease at first presentation to paediatric rheumatology: results from the childhood arthritis prospective study. Rheumatology (Oxford) 2008, 47(7):991-995.
• [33]Hehir M, Carr M, Davis B, Radford S, Robertson L, Tipler S, Hewlett S: Nursing support at the onset of rheumatoid arthritis: Time and space for emotions, practicalities and self-management. Musculoskeletal Care 2008, 6(2):124-134. Epub 2007/10/09
• [34]MacIsaac AM, Colicchia R, Helm J, Marrale JC, McCloskey D, Tamburello S: Standards of practice, professional nursing competencies in rheumatology. 2010. http://www.rheumatology.org/practice/clinical/standards/nursestandards.asp webcite
• [35]Courson S: What is telephone nurse triage? AnswerStat 2004, 2(2):30-34.
• [36]Ryan S: The social implications of rheumatic disease. In Rheumatology nursing: a creative approach. 2nd edition. Edited by Hill J. London: Whurr Publishers; 2006:193-215.
• [37]Ryan S, Hill J: The principles, practice and evolution of rheumatology nursing. In Rheumatology nursing: a creative approach. 2nd edition. Edited by Hill J. London: Whurr Publishers; 2006:3-24.
• [38]Theofanidis D: Chronic illness in childhood: psychosocial adaptation and nursing support for the child and family. Health Sci J 2007, 1(2):1-9.
• [39]Juhola H, Kukkurainen ML, Suominen T: Rheumatology nurses’ work-related empowerment. Musculoskeletal Care 2007, 5(2):91-97.
• [40]Kyngäs H: Compliance of adolescents with chronic disease. J Clin Nurs 2000, 9(4):549-556.
• [41]Kyngäs H: Patient education: perspective of adolescents with a chronic disease. J Clin Nurs 2003, 12(5):744-751.
• [42]Light PA, Hupcey JE, Clark MB: Nursing telephone triage and its influence on parents’ choice of care for febrile children. J Pediatr Nurs 2005, 20(6):424-429.
• [43]Larson-Dahn M: Tel-eNurse practice: A practice model for role expansion. J Nurs Adm 2000, 30(11):519-523.
• [44]Valanis BG, Gullion CM, Moscato SR, Tanner C, Izumi S, Shapiro SE: Predicting patient follow-through on telephone nursing advice. Clin Nurs Res 2007, 16(3):251-269.
• [45]Bunn F, Byrne G, Kendall S: Telephone consultation and triage: effects on health care use and patient satisfaction. Cochrane Database Syst Rev 2004., (3) http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004180/frame.html webcite
• [46]Giesen P, Ferwerda R, Tijssen R, Mokkink H, Drijver R, van den Bosch W, Grol R: Safety of telephone triage in general practitioner cooperatives: do triage nurses correctly estimate urgency? Qual Saf Health Care 2007, 16(3):181-184.
• [47]Marklund B, Strom M, Mansson J, Borgquist L, Baigi A, Fridlund B: Computer-supported telephone nurse triage: an evaluation of medical quality and costs. J Nurs Manag 2007, 15(2):180-187.
• [48]Cariello FP: . Computerized telephone nurse triage. An evaluation of service quality and cost. J Ambul Care Manage 2003, 26(2):124-137.
• [49]Hagan L, Morin D, Lépine R: Evaluation of telenursing outcomes: satisfaction, self-care practices, and cost savings. Public Health Nurs 2000, 17(4):305-313.
• [50]Shapiro SE, Izumi S, Tanner CA, Moscato SR, Valanis BG, David MR, Gullion CM: Telephone advice nursing services in a US health maintenance organization. J Telemed Telecare 2004, 10(1):50-54.
• [51]Fincher L, Ward C, Dawkins V, Magee V, Willson P: Using telehealth to educate Parkinson’s disease patients about complicated medication regimens. J Gerontol Nurs 2009, 35(2):16-24.
• [52]Hutti MH, Usui WM: Nursing telephonic case management and pregnancy outcomes of mothers and infants. Lippincotts Case Manag 2004, 9(6):287-299.
• [53]O’Connor KOS, Mowat DL, Scott HM, Carr PA, Dorland JL, Tai KFW: A randomized trial of two public health nurse follow-up programs after early obstetrical discharge: an examination of breastfeeding rates, maternal confidence and utilization and costs of health services. Can J Public Health 2003, 94(2):98-103.
• [54]Al-Dawoud M, Thompson L, Al-Khaffaf H: Evaluation of a telephone clinic for patients with intermittent claudication. Br J Nurs 2009, 18(8):495-497.
• [55]Mistiaen P, Poot E: Telephone follow-up, initiated by a hospital-based health professional, for postdischarge problems in patients discharged from hospital to home. Cochrane Database Syst Rev 2006., (4) http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD004510/frame.html webcite
• [56]Cook PF, Emiliozzi S, Waters C, El Hajj D: Effects of telephone counseling on antipsychotic adherence and emergency department utilization. Am J Manag Care 2008, 14(12):841-846.
• [57]Cook PF, McCabe MM, Emiliozzi S, Pointer L: Telephone nurse counseling improves HIV medication adherence: an effectiveness study. J Assoc Nurses AIDS Care 2009, 20(4):316-325.
• [58]Chang K, Davis R, Birt J, Castelluccio P, Woodbridge P, Marrero D: Nurse practitioner-based diabetes care management: Impact of telehealth or telephone intervention on glycemic control. Dis Manag Health Outcome 2007, 15(6):377-385.
• [59]Vermeire Etienne IJJ, Wens J, Van Royen P, Biot Y, Hearnshaw H, Lindenmeyer A: Interventions for improving adherence to treatment recommendations in people with type 2 diabetes mellitus. Cochrane Database Syst Rev 2005., (2) http://www.mrw.interscience.wiley.com/cochrane/clsysrev/articles/CD003638/frame.html webcite
• [60]Bohnenkamp SK, McDonald P, Lopez AM, Krupinski E, Blackett A: Traditional versus telenursing outpatient management of patients with cancer with new ostomies. Oncol Nurs Forum 2004, 31(5):1005-1010.
• [61]Jerant AF, Azari R, Martinez C, Nesbitt TS: A randomized trial of telenursing to reduce hospitalization for heart failure: patient-centered outcomes and nursing indicators. Home Health Care Serv Q 2003, 22(1):1-20.
• [62]Broemeling AM, Watson DE, Prebtani F: Population patterns of chronic health conditions, co-morbidity and healthcare use in Canada: implications for policy and practice. Healthc Q 2008, 11(3):70-76.
• [63]Gischler SJ, Mazer P, Poley MJ, Tibboel D, van Dijk M: Telephone helpline for parents of children with congenital anomalies. J Adv Nurs 2008, 64(6):625-631.
• [64]Letourneau MA, MacGregor DL, Dick PT, McCabe EJ, Allen AJ, Chan VW, MacMillan LJ, Golomb MR: Use of a telephone nursing line in a pediatric neurology clinic: one approach to the shortage of subspecialists. Pediatrics 2003, 112(5):1083-1087.
• [65]Mills E, Chan A-W, Wu P, Vail A, Guyatt G, Altman D: Design, analysis, and presentation of crossover trials. Trials 2009, 10(1):27. BioMed Central Full Text
• [66]Haynes RB, Sackett D, Guyatt GH, Tugwell P: Clinical Epidemiology. How to do Clinical Practice Research. 3rd edition. Philadelphia: Lippincott Williams & Wilkins; 2006:496 p.
• [67]Cox CL: A model of health behavior to guide studies of childhood cancer survivors. Oncol Nurs Forum 2003, 30(5):E92-E99.
• [68]Wagner D, Bear M: Patient satisfaction with nursing care: a concept analysis within a nursing framework. J Adv Nurs 2009, 65(3):692-701.
• [69]Moscato SR, Valanis B, Gullion CM, Tanner C, Shapiro SE, Izumi S: Predictors of patient satisfaction with telephone nursing services. Clin Nurs Res 2007, 16(2):119-137.
• [70]Wahlberg AC, Cedersund E, Wredling R: Telephone nurses’ experience of problems with telephone advice in Sweden. J Clin Nurs 2002, 12(1):37-45.
• [71]Polaschek L, Polaschek N: Solution-focused conversations: a new therapeutic strategy in well child health nursing telephone consultations. J Adv Nurs 2007, 59(2):111-119.
• [72]Beaulieu R, Humphreys J: Evaluation of a telephone advice nurse in a nursing faculty managed pediatric community clinic. J Pediatr Health Care 2008, 22(3):175-181.
• [73]Ryan S, Browne A, Home D, Wild A, Hennell S, Homer D: Benchmarking the nurse consultant role in rheumatology. Nurs Stand 2006, 20(33):52-57.
• [74]Tijhuis GJ, Zwinderman AH, Hazes JM, Breedveld FC, Vlieland PM: Two-year follow-up of a randomized controlled trial of a clinical nurse specialist intervention, inpatient, and day patient team care in rheumatoid arthritis. J Adv Nurs 2003, 41(1):34-43. Epub 2003/01/10
• [75]Sackett D: The tactics of performing therapeutic trials. In Clinical epidemiology How to do clinical practice reserach. 3rd edition. Edited by Haynes RB, Sackett DL, Guyatt GH, Tugwell P. Philadelphia: Lippincott Williams & Wilkins; 2006:p. 66-p. 172.
• [76]Attkisson CC, Zwick R: The client satisfaction questionnaire. Psychometric properties and correlations with service utilization and psychotherapy outcome. Eval Program Plann 1982, 5(3):233-237.
• [77]Attkisson CC, Greenfield TK: The UCSF client satisfaction scales: I. The client satisfaction questionnaire-8. In The use of psychological testing for treatment planning and outcomes assessment. 3rd edition. Edited by Maruish ME. Mahwah, New Jersey: Lawrence Erlbaum Associates; 2004:799-811.
• [78]Uwe F: Doing interviews. London: SAGE publications Ltd; 2008:160.
• [79]Consolaro A, Ruperto N, Bazso A, Pistorio A, Magni-Manzoni S, Filocamo G, Malattia C, Viola S, Martini A, Ravelli A: Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum 2009, 61(5):658-666. Epub 2009/05/01
• [80]Filocamo G, Consolaro A, Schiappapietra B, Dalpra S, Lattanzi B, Magni-Manzoni S, Ruperto N, Pistorio A, Pederzoli S, Civino A, Guseinova D, Masala E, Viola S, Martini A, Ravelli A: A new approach to clinical care of juvenile idiopathic arthritis: the juvenile arthritis multidimensional assessment report. J Rheumatol 2011., 38(5) Epub 2011/03/03
• [81]Solari N, Filocamo G, Schiappapietra B, Consolaro A, Magni-Manzoni S, Viola S, Ruperto N, Saad-Magalhaes C, Tani D, Serpico S, Martini A, Ravelli A: Preliminary validation of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR) in 403 clinic patients. Pediatr Rheumatol 2008, 6(Suppl 1):106. BioMed Central Full Text
• [82]Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A, Erikson P: Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) Measures: report of the ISPOR task force for translation and cultural adaptation. Value Health 2005, 8(2):94-104. Epub 2005/04/05
• [83]Filocamo G, Schiappapietra B, Manzoni SM, Lanni S, Solari N, Viola S, Pistorio A, Ruperto N, Tani D, Martini A, Ravelli A: Development and initial validation of the parent acceptable symptom state in juvenile idiopathic arthritis (JIA). Pediatr Rheumatol 2008, 6(Suppl 1):117. BioMed Central Full Text
• [84]De Civita M, Dobkin PL, Ehrmann Feldman D, Karp I, Duffy CM: Development and preliminary reproducibility and validity of the parent adherence report questionnaire: a measure of adherence in juvenile idiopathic arthritis. J Clin Psychol Med Settings 2005, 12(1):1-12.
• [85]Toupin April K, Ehrmann Feldman D, Zunzunegui MV, Duffy CM: Association between perceived treatment adherence and health-related quality of life in children with juvenile idiopathic arthritis: perspectives of both parents and children. Patient Prefer Adherence 2008, 2:121-128. Epub 2008/01/01
• [86]Creswell JW, Plano Clark VL: Designing and Conducting. Mixed Methods Research. Thousand Oaks: Sage Publications, Inc.; 2007.
• [87]Mayring P: Qualitative content analysis [28 paragraphs]. Forum Qual Soc Res 2000, 1(2):Art. 20.
• [88]Tabachnik BG, Fidell LS: Using multivariate analysis. 4th edition. Boston: Allyn and Bacon; 2001.
• [89]Cliniques Ordonnance du 17 octobre 2001 sur les essais de produits thérapeutiques (OClin) 2001.
• [90]Wu L, Forbes A, Griffiths P, Milligan P, While A: Telephone follow-up to improve glycaemic control in patients with Type 2 diabetes: systematic review and meta-analysis of controlled trials. Diabet Med 2010, 27(11):1217-1225.
• [91]Fiese BH, Everhart RS: Medical adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors. Curr Opin Pediatr 2006, 18(5):551-557.