A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care

@article{Allori2017ASS,
  title={A Standard Set of Outcome Measures for the Comprehensive Appraisal of Cleft Care},
  author={Alexander C. Allori and Thomas Kelley and John G. Meara and Asteria Albert and Krishnamurthy Bonanthaya and Kathy L. Chapman and Michael L. Cunningham and John Daskalogiannakis and Henri{\"e}tte H W de Gier and Andrew A. C. Heggie and Cristina P{\'e}rez Hern{\'a}ndez and Oksana A. Jackson and Yin Jones and Loshan Kangesu and Maarten J. Koudstaal and Rajiv Kuchhal and Anette Lohmander and Ross E. Long and Leanne Magee and Laura A. Monson and Elizabeth Rose and Thomas J. Sitzman and Jesse A. Taylor and Guy Thorburn and Simon Van Eeden and Chris Williams and John O. Wirthlin and Karen W.Y. Wong},
  journal={The Cleft Palate-Craniofacial Journal},
  year={2017},
  volume={54},
  pages={540 - 554}
}
Care of the patient with cleft lip and/or palate remains complex. Prior attempts at aggregating data to study the effectiveness of specific interventions or overall treatment protocols have been hindered by a lack of data standards. There exists a critical need to better define the outcomes- particularly those that matter most to patients and their families-and to standardize the methods by which these outcomes will be measured. This report summarizes the recommendations of an international… 

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References

SHOWING 1-10 OF 86 REFERENCES

A six-center international study of treatment outcome in patients with clefts of the lip and palate: Part 5. General discussion and conclusions.

  • W. ShawE. Dahl C. Roberts
  • Medicine
    The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
  • 1992
It appears, however, that acceptable results can be achieved by different programs and ultimately clinical choices may be based on factors such as complexity, costs, and demands of treatment.

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate

The collaborative process used to achieve consensus in the academic and clinical measurement of psychological adjustment to cleft lip/palate is described, resulting in a conceptual framework comprising six domains of adjustment and corresponding risk/protective factors that are measureable across key developmental time points.

Discussion: Measuring Quality of Life in Cleft Lip and Palate Patients Currently Available Patient-Reported Outcomes Measures

The method of assessing the outcomes of cleft lip and palate surgery is practitioner reported, rather than patient reported, makes the article by Eckstein and colleagues all the more relevant.

Measuring Quality of Life in Cleft Lip and Palate Patients: Currently Available Patient-Reported Outcomes Measures

There is a lack of comprehensive, valid, and reliable questionnaires for cleft lip and palate surgery–specific instruments, and further research to develop and validate cleft palate surgery-specific instruments is needed.

Measuring outcomes in cleft lip and palate treatment.

Opportunities and Challenges in Establishing a Cohort Study: An Example from Cleft Lip/Palate Research in the United Kingdom

  • N. StockKerry Humphries J. Sandy
  • Medicine
    The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
  • 2016
The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P and will form the basis for many future projects and collaborations, both in the United Kingdom and around the world.

Comparative Effectiveness Studies Examining Patient-Reported Outcomes among Children with Cleft Lip and/or Palate: A Systematic Review

Comparative studies of patient-reported outcomes among patients with cleft lip and/or palate are infrequent, and many instruments exist to measure patient- reported outcomes in this population, but no specific standard exists.

Patients/carers and clinicians can set joint priorities for research in cleft lip and palate.

The Eurocleft Study: Intercenter Study of Treatment Outcome in Patients with Complete Cleft Lip and Palate. Part 4: Relationship among Treatment Outcome, Patient/Parent Satisfaction, and the Burden of Care

  • G. SembV. Brattström W. Shaw
  • Medicine
    The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
  • 2005
This study highlights various challenges involved in questionnaire surveys into patient/parent satisfaction, and underlines the need for collective efforts to improve the understanding of this issue.

The Eurocleft Study: Intercenter Study of Treatment Outcome in Patients with Complete Cleft Lip and Palate. Part 5: Discussion and Conclusions

Measurement of clinical outcome in childhood is an important and valid form of clinical audit, and intercenter studies are more informative than single center reports, and will have an important future role in cleft care.
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