Eur J Pediatr Surg 2021; 31(05): 452-453
DOI: 10.1055/s-0041-1729899
Letter to the Editor

Objective Professionals, Subjective Patients? Unbiased Thinking Facilitates Better, Multidimensional Treatment

1  Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Team for Multidisciplinary Behavioural Treatment of Continence Problems, European Reference Network (ERN) eUROGEN member, Bremen, Germany
,
Jutta Ohlms
2  Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte - MBT Bremen, Bremen, Germany
,
Martina Faiss
2  Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte - MBT Bremen, Bremen, Germany
,
Electra Stamatopoulos
2  Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte - MBT Bremen, Bremen, Germany
,
Nicole Schwarzer
3  Patient Organisation SoMA, ERN eUROGEN European Patient Advocacy Group Representative (ePAG), ERN eUROGEN, Munich, Germany
,
Anke Widenmann-Grolig
4  Esophageal Atresia and Tracheo-Esophageal Fistula Support Federations KEKS & EAT & ePAG ERN ERNICA, Stuttgart, Germany
,
Dalia Aminoff
5  Aimar—Patient Organization, Board Member, ePAG eUROGEN, Rome, Italy
,
Michel Haanen
6  Patient Organisation VA—Board Member, Sittard, The Netherlands
,
Ducio Cavalieri
7  Patient Organisation AMORHI—Board Member, Florence, Italy
8  Institute of General Microbiology, University of Florence, Firenze, Toscana, Italy
,
Ekkehart Jenetzky
9  Patient Organisation SoMA—Board Member, Munich, Germany
10  Department for Child and Adolescent Psychiatry, Johannes Gutenberg-University, Mainz, Germany
11  School of Medicine, Faculty of Health, University of Witten/Herdecke—Humanmedizin, Lehrstuhl für Medizintheorie, Witten, Germany
› Author Affiliations

Health-Related Quality of Life Assessment in Children and their Families: Aspects of Importance to the Pediatric Surgeon

We read this article with great interest because exploring the health-related quality of life (HRQOL) of our patients is crucial to guide our diagnostic and therapeutic actions to their very best.[1]

The authors stated that “the development of the HRQOL field in medicine was spurred not only by an evolving recognition of the subjective factor, but also by the increasing prevalence of chronic health conditions requiring long-term treatment and life-long care.”

In this way, the patients' judgement of their own situation is labeled as merely subjective, while the authoring health professionals implicitly express the medical system's claim to assess the patients' conditions in contrast to this in an objective manner.

“Objective” means “unbiased and balanced,” even “completely true,[2] ” and is regarded as clearly superior and predominant in comparison with subjectivity which “does not show a clear picture or is just a person's outlook or expression of opinion,”[2] and as such is limited by a certain perspective, emotions, personal interests, and possible swift changes.

Implicitly ascribing these categories of objective versus subjective to professionals versus patients is not appropriate in our sight, while correctly using these concepts opens the way for better multidisciplinary care, as can be shown hereinafter.

Every health care worker only has a subjective perspective, professionally trained—yes, but not at all free of personal interests and other limitations which sometimes may clearly contradict the patients' welfare.[3] On the other hand, many patients and patient representatives became experts in the realm of their own disease; on top of this, they acquired many professional competencies, even scientific or medical, in their own personal training.

The health care worker can only offer his or her professional subjectivity. This can be a lot, and hopefully turns out to be sufficient for the individual patient, but in chronic and multisystem health conditions, it often does not.

An example: the actually valid Krickenbeck's classification of fecal incontinence in anorectal malformations, as agreed on at a pediatric surgical conference without involvement of patient representatives,[4] lists the following grades of soiling:

  • Grade 1: occasionally (once or twice per week).

  • Grade 2: every day, no social problem.

  • Grade 3: constant, social problem.

Grade 2: daily involuntary loss of fecal matter, without any social problems, hardly exists. On the opposite, the affected patients are severely burdened and restricted by this disability. In this point, the “objective classification” mainly serves the treating pediatric surgeon; it gives him or her a good feeling, in spite of a bad (postoperative) result, while the patients confirming this are answering socially desirable but conceal their subjective, yet truly bad situation.

The patients' own assessment of their multidimensional QOL deserves a multidisciplinary team to properly understand and meet their different needs. This is the only way to get closer to the ideal of objectivity and integrated, holistic care.

Centralization of care of rare malformations, and the setting up and sufficient funding of multidisciplinary teams in these centers, is mandatory to reach this aim and deserves all support of both the medical community and politics.



Publication History

Received: 27 January 2021

Accepted: 06 April 2021

Publication Date:
14 June 2021 (online)

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